Thursday, September 27, 2012

Too Many Signs To Ignore

Tonight was spent having date night with Carter.  It is a special time for the two of us to hang out and catch up.  I'm so grateful my husband understands the importance of it.  You see, when we go too long not having mommy and Carter time, he and I both suffer.  It's important to remember that we spent almost two years just the two us and so we cherish that time when we get it.  Chris took the baby and we went to McDonald's.  Yes, groan, Mcdonald's. 

It's Monopoly ya know!  ;) 

We ordered our food, all items with Monopoly pieces, and sat at a high table near a window.  This is important to note because with Chase around we cannot sit at high tables and Carter loves them. 

We chatted and ate for a few minutes when a shady looking young man sat down at the table next to us.  What made him shady?  I've been turning that over in my mind all night.  I mean in my business I hire lots of young kids and a lot of them have seen hard times in this life but not too many of them do I consider with the word shady.  Looking back I believe it was the way that he stared at us and how he chose the table right next to ours when every other one was empty that truly made me uncomfortable.  I wasn't scared or nervous but I definitely took inventory of our surroundings noting that no one could see us where we sat if something were to happen. 

I let on nothing to Carter and he went on happily telling me stories about school.  So engrossed in four square stories I quickly forgot about the young man.

Then out of the corner of my eye I noticed what the boy was eating.  I'm not sure why it mattered or was relevant but he had two sandwiches off the dollar menu.  Just a glance at his tray and iimmediately I wondered about his life.  I'll admit, I am such a people watcher its hard to turn it off.  About that time two young blond girls walked up to him one of them holding out her phone for him to see the text she had just received and inwardly I breathed a sigh of relief.  He had friends, he was not scoping or surveying the store for people to rob but really there only to eat. 

I saw the girl laugh and then show him something else on the phone.  That was when it hit me.  Like a bowling ball to the head.  The reason he stared so intently.

He was deaf. 

I have noticed that with my hearing compromised I study peoples faces more.  With no sound at all I suppose that elevates. 

Carter noticed too as the girls made noises and the boy just sat in silence.  Clearly they could not sign and so they were using  a program on their phone to type him messages and he was typing some back. 

"Why aren't they using sign language mommy?"  Carter asked me a bit too loudly but let's face it teenagers are in their own world and neither girl noticed.

"They probably don't know how honey."  I said shrugging my shoulders. 

"I know some."  he boasted as his fingers made the A then B and C. 

"I'm so proud of you!  Mommy has been learning some also but I really need to find a class so I can know more."  His eyes were wide as he listened.

"Teach me something mom." His sweet little face looked up at me expectantly.

And so I taught him how to ask someone's name and then how to respond.  He caught on so easily! 

After we returned home he showed Chris what he had learned. 

Just like I said in the link before this one.  My world keeps changing and its time to embrace it. 

Judgement comes too easy and I am glad I was slapped in the face with truth.  Forced to self reflect and to grow not only by a boy I'll never know but by my own child. 

I know he noticed us practicing the sign language and I hope he was not offended.  If I would have only known more I would have at least said something...

It's time to make that a priority - too many signs to ignore. 

The Index Case

So this week has spawned a collision of issues in my head.  When this happens I turn to my old standby which for this 36 year old is a good old fashioned notebook.  Oh how I love the feel of the pages of a brand new spiral and I savor the anticipation of filling it with words.

All my life I have collected notebooks and pens and every year "back to school" supply shopping marks one of my all time favorite moments.  It started in Kindergarten and I have participated every year since.  Yes, even as an adult with no children I would go browse the isles looking for the perfect addition to my collection.  So what do I fill them with?  Why writing of course.

I can remember one particular afternoon when I was around 12, I came home from the store with my new purchase a small college lined notebook and green gel pen. Immediately I went up to my room, jumped on my bed belly first and with fresh paper smell filling my nose I opened it up and began to write.  Countless journals and novels later I still turn to the feel of the page and the comfort of the pen over typing. 

So as I have practiced my whole life in and attempt to make sense of things, I grabbed a notebook and began write.  Every thought that popped into my head no matter how random or obtuse became a line item and surprisingly what took shape was a well related sense of my feelings.  In essence from the seeming chaos of my mind came a common thread.  Research. 

Research was not my favorite thing but in this case it was necessary.  You see at Chase's one year check I had to tell the Pediatrician about my hearing issues as the specialist had recommended.  I also told her for my peace of mind.  Even if it was a new hereditary item that could not be prevented I believe with warning we could at least be prepared. 

At first mention of the issue she asked if they had told me it was Sensorineural Hearing Loss.  Shrugging my shoulders slightly I recounted briefly how he said my little villi were "dying off".  She nodded in understanding.  I continued on mentioning that so far there is no hereditary link but that possibly I could be the first one.  "Right, the index case."  She said.

The index case....

Hmmm

How do I feel about that terminology?  Not great.  And in that moment I wasn't sure what she meant but plans to look it up were already forming.

As for the kids, with Chase she advised that I just monitor speech development.  Indicating that it would be pretty obvious if he was having trouble hearing because his talking would not develop.  With Carter she said I needed to look harder because it was easy to compensate for a hearing loss unknowingly.

Really.  I had no idea. 

Sarcasm should be dripping off your screen now.

So for Carter I have to watch his school work, attention span and check in with his teacher more frequently to see if she notices any changes in him.  Since he is a very bright child I am hoping that it will also be obvious.  He will also receive screenings at school...research. 

Index case:  The case of the original patient that stimulates investigation of other family members to discover a possible genetic factor.

Yep, that's me.

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.

Causes of SNHL are: 
  • Malformation of the inner ear - The reason he asked for an MRI.
  • Exposure to consistent and very loud noise - I have not had that.
  • Illness as a child - I have had no recorded illness that would have caused this.
  • Aging - Not at 36.
  • Head Trauma - I have never had any type of head trauma.
  • Prescription Drugs - I have not taken any recently or any that I know if that cause this.
  • Genetic/Hereditary - ???
Taking all of that into account I would assume that if my MRI (which I will be taking to him on the 9th) shows a normal ear structure than the obvious answer is that I am in fact the Index case.

The index case....

I'm sorry for putting it out there again it just seems so overwhelming.  I don't want to be the start of any genetic or hereditary issue.

To think that one day my kids, grandkids, even great grandkids might have to put down SNHL on their health history forms bothers me a great deal. 

And to drive home the impact even further, my friend told me how yesterday when her son and Carter were playing outside that she over heard a conversation.  Apparently,  her son yelled loudly and it hurt Carter's ear.  His response was something in the way of, that hurts my hears and my mom has to wear things to help her hear and if you keep screaming in my ears so will I. 

Sure enough that night he came in and told me he needed his hearing checked because his friend was yelling too close to his ear.  He's such a sweet boy and I HATE that I have given him something to worry about at such a young age and also that it will always be a part of his future. 

But there is nothing that I can do about it now.  I have to start adjusting my reality taking into account that this will be part of me forever.

The index case....

In a hundred years when I'm long gone someone might mention my name in a sentence and I hope it goes a little something like this, "Great Great Grandma Ruff lost her hearing when she was young and had to wear hearing aids but she never let it hold her back." 


Wednesday, September 19, 2012

Dial Up The Ear - Dial Back The Fear

As I approached what will soon become my most frequented Doctor's office I was struck by the notion that this change was good.  How can that be?  My mind immediately questioned while my heart patiently continued to beat providing time for logic to catch up.  Because I'm different the light bulb flashed above my head, and not in a bad way.

In fact, I've been on a quest for awhile now to love people.  Whoa watch out, I'm not going all hippy on you now "Peace and love man.",  (insert hippy accent with a lopsided grin).  No, that is not what I am saying at all.  I'm also not saying that I want or believe that peace can exist in this world,  (insert bumper sticker that says COEXIST).  No, I am not saying that either. 

So what do I mean?   I mean that I want to drop away the judgemental glasses that a high school girl looks at the world through and become someone who goes beyond.  Someone who appreciates the uniqueness rather than turning away from it because it isn't the same. 

Truth is I haven't had much luck.  It's hard to like the person who goes in the speedy checkout lane with 30+ items, the customer that yells at my high school cashier and makes her cry, or the someone that has hurt you beyond what you think can be carried.  Yes, life makes these challenges seem big and overwhelming.  And as hard as I've tried I feel my tolerance lowering, not growing as I get older. 

So why do I feel different?  Pinpointing the why isn't revealing itself clearly yet but I know that I am.  There are several subtle changes I can sense.  1.  Small things are not hurting me like they might have before.  The bumps, scrapes and paper cuts of life are simply minor irritations that I deal with by slapping a band-aid on whatever the ailment may be and heading out the door.  2.  Things that used to scare me don't anymore.  3.  I have more empathy.   

And so with all of this rambling around in my head I met with my hearing aid consultant.  To help you envision her, she's young, married with no children yet but she absolutely loves her nieces and nephews.  She is very friendly and animated making me feel warm and welcomed each time I arrive.  In short I like her a lot.

She asked how it was going and I revealed that the sound had dulled considerably and that I was having issues at work still.  I also confessed that last night it was once again hard for me to hear the TV.

"Hmmm, can I see them for a minute?"  she asked and I immediately handed them over.  "Well, their working."  Her brow furrowed as her hands began typing on the computer. 

"That should help."  she said handing them back to me. 

I put them in and she was grinning broadly as she explained that my mind may not have assigned back ground noises yet at work.  That every clanking dish, steamer, tv, etc. was a distraction from my hearing what was being said.  Apparently it takes the brain awhile to deam those as unimportant sounds and naturally dim them so she adjusted my hearing aids to do that for me.  They were also hiked up a bit - she "dialed up my ear" and said there was plenty of room to go up. 

As I placed them back in sound flooded my ears immediately.  When the hearing aids are out now I feel like I have a cotton ball blocking my ear from hearing.  I don't like that feeling at all.  It also sounds like a chorus of crickets and locusts are singing to me on a warm summer evening.  The hearing aids help put that to bed as well. 

Later in the evening when I had taken out the hearing aids for the night the ringing returned with a vengeance.  It's getting louder my brain began taunting me and this time the heart agreed.  Fear began to move into my thoughts.  I let it in knowing it can't be helped and that it has to surface sometimes.  So there it was fresh after a "significant" (her words) volume increase.  To be expected I reasoned with myself. 

Just two weeks until my next hearing test and then I will know for sure if things have changed.  Another moment of truth in this journey.  A day that won't be easy on me. 

I can do this I tell myself repeatedly.  I can do this because I have to.  I. can. do. this.

So I dialed up my ear and then I dialed back the fear. 
 

Tuesday, September 18, 2012

The High Ponytail - Epic Fail

So yesterday I asked Chris before I went to the store if he could notice the hearing aids with my hair in a high ponytail.  He looked confused and commented not really but asked why the concern when I wear a ponytail all the time for work.  It was then that I confessed my little secret.  I had been wearing my hair in a low and loose ponytail that kept hair behind my ears and eyes off the new hardware. 

"Why are you worried about it, who cares?"  Was his response and so off I went to the store with his words bouncing around in my brain.

Turns out he was right, no one did care and my trip to the store and back went without much fanfare. 

Armed with my new confidence this morning I decided to wear my hair in the same high style to work. No one will notice I reasoned with myself and even if they did again, why did I care?  My ears do not define me.  In fact the contraptions were not the root of the embarrassment rather the vehicle to others discovering what was going on.  It is a fear that a label will automatically be placed upon me.  That I will be thought of as deaf (which by definition I am). 

None the less I forgot about them, as is regular practice now a days, until half way through lunch when the co-worker beside me blurted out, "What's that behind your ear?" 

In a busy lunch joint it seemed to me that everything went silent.  In truth everyone working on my line did stop and look at me.  I mean I'm the boss and they wanted to see what was going on.  Honestly I think he thought it was some sort of phone or music device and he was trying to call me out. 

Calmly and with as much apathy as I could muster I shrugged my shoulder and said that they were hearing aids.  Furrowing his brow he continued on, "Have you always had them?".  This time I spoke more quietly and responded that they were new, like two weeks new.  "Oh."  He said in return allowing a brief pause before he continued on, "How much did they cost?  Cause I am partially deaf in one ear."  Another employee who was listening in, let's face it they were all listening in, commented that he was 80% deaf in one ear.  I only shook my head in agreement.  What can be said?  Why a joke of course!!  Hahaha  So I used my humor protection immediately and commented, "Yeah I could be considered disabled now, so I told Chris he was out of luck and couldn't fire me without a law suit."  Everyone got a laugh out of it and the subject was put to bed.  For those of you that don't know why that is funny it is because my husband and I own our business and I work there for free.

Having them find out wasn't really that bad.  I know that word will travel now amongst the staff but that is OK.  I will from now on refer to them as my super sonic ears at work.  Letting everyone know that I am always listening and will always know what they are talking about.  Now that should make them paranoid. 

Tonight after I put the baby to bed I went on the internet looking for a sign language class and I cannot find one in our area at all!  It is very surprising how few classes there are considering we have a school for the deaf right here in my city.  I'm thinking about just stopping by their office because perhaps these sort of things are not listed online.  I did start a bit on my own from the ASL website.  Already I picked up a few things but without someone to practice them on I will never learn it.  I know that from the countless times that Chris and I have tried to learn another language.  In our marriage we have started and stopped learning another language three times.  It is just to hard to do independently without some real world conversations.

I want to find one soon to learn it, not out of necessity but for myself.  Because even if I never have to use it exclusively I still think it would be a good thing to know.  I want to be someone who can communicate with those that have trouble hearing.

Had a lot of trouble tonight with the TV.  Not liking that feeling.  Hearing Aid follow up tomorrow.  I am hoping she lets me try the one step up version.  


Monday, September 17, 2012

Hearing Test #1 from 09-12

I wanted to insert a scan of my first and second hearing test done at the ENT.  I think this will help people understand more clearly what has changed.  The plain dots indicate my hearing three years ago and they are all above normal.  The dots with circles and connected in the lines are my hearing as of two weeks ago. 
The testers notes read moderate to severe hearing loss. 

Normal hearing is where the darker line is between 20 & 30 anything above that is good.


These are the definitions for those terms:

Moderate Hearing Loss
: An average loss of hearing acuity between 40-75 dB.
Those with a moderate hearing loss have great difficulty in hearing and
understanding conversational speech when not using a hearing aid. These
people generally benefit significantly from the use of personal hearing aids and
ALD’s.

Severe Hearing Loss: An average loss of hearing acuity between 70-95 dB.
Powerful hearing aids and assistive listening devices may benefit those with a
severe hearing loss. Even with the use of a hearing aid, understanding of speech
is often severely limited. Often these people rely on speech-reading and/or sign
language to understand the spoken word, especially in group situations.


The third hearing test I had at the specialists office showed my hearing was down about 5 more clicks in every single area and that includes my lower hearing which is currently normal.  This is what prompted the 1 month re-check and the MRI order. 

My next hearing test will be in about 2 weeks.  I am anxious to see if the hearing degradation has slowed, increased or stabilized.  I am hoping for the latter.



Saturday, September 15, 2012

I'm OK!

This has been such a tricky thing, the art of telling people news that isn't life threatening but is definitely life altering.  I want you all to know that -

I am OK! 

This blog is going to have many emotions as I progress down this unknown road but the bottom line is I am doing well.  In fact when I called my brother last night to tell him the news I couldn't stop myself from telling jokes and making light of it all.  Because as I have said before, I'm not worried.  Even though I was shaking as I talked to him due to nerves it wasn't all-consuming or overpowering.  It was just hard news to pass along.  It was important that I clearly convey to him that they are not saying it is genetic.  From one parent to another that is our greatest concern. 

Although side note: my kids will have to now have regular hearing checks more frequent than normal.

So if its not genetic, not cancer, not an accident or head trauma then why doesn't the unknown bother me?  Because the unanswerable is an answer.  I'm not in control of this and I am only along for the ride. 

All of you know Chris and I had struggles having children.  In those times I would allow fear and sadness to take over my thoughts and change who I was.  I became bitter before Carter came along towards those who had children easily and on demand.  My relationships suffered and my behavior was self destructive.  After having Carter you would have thought those demons would have been put to rest but that was not the case.  Instead I allowed them to once again corrupt my mind as I desperately wanted child number two.  Funny how when I would finally give up control and realize that I didn't have any to start with that all of a sudden I would fall pregnant.  These things happen, this order amongst the chaos. 

This time I am not even going "there".  I don't dwell on what my life might end up looking like or focus on a one track minded search for a timeline.  Instead I choose to be.  To rest in what seems like my life plan. 

The lists I made on day one are there because I had to get them out of my way in order to continue moving forward.  They are fears that I legitimately have and always will but things that I do not look at and let get me down. 

I have a few Pollyanna's in my life and everyone knows that I am not one of them.  In my mind I know that everything will not be fine and that there will be tough times when I struggle, but with certainty I know I will make it through.  Wading as I may through all the mud attempting to only finish the race, not come out clean. 

So I'm OK!  I'm still me, not broken, not in need, not dying but most definitely working through some hardships and I appreciate you all coming along for the ride. 

Friday, September 14, 2012

The Sound of Music...Without The Nuns

It's hard to describe today.  I feel so much more appreciative of everyday things.  For instance last night I was watching X Facto, even though I said I would not watch because Brittany Spears is on it  (don't hate me Linda! haha).  I should say that I am a fan of her in general because I think she is an amazing performer but I just don't think her voice is that great.  Still, I digress.  I was watching X Factor and this tiny little girl of 13 came on and started singing "Feeling Good" by Nina Simone and it was rockin!  I got chills and even teared up she was so frigging amazing.  And I reveled in the music, the words and the sound. 

Most of you know how much I love music.  I love it all and because of that my phone is an eclectic mess.  Anything from musicals to Linkin Park - Christian music to Eminem - Nat Cole to David Cook its all there.  Chris and I are currently into a bit of Irish and Indian music (not mixed together of course).  But ultimately my most relaxing music is definitely jazz.  Give me Diana Krall, Buble, or Harry Connick Jr. and a nice relaxing candle lit house and I will be in heaven.  In fact, as a child I always pictured myself as the loft dwelling, jazz listening, wine party throwing and kids with the nanny type.  At age 13 I told my parents I wanted to live in New York and I still love that city very much but its really not me.     

No, I like my suburban life.  My husband has satisfied my "city" need by taking me to New York, Paris, London and of course Kansas City!  Whenever a musical comes we will go down town to eat and see the show.  I love it. 

My most recent Facebook post was regarding Les Miserable, my favorite all time musical.  I am beyond excited for the movie due out in December.  Ann Hathaway has done an amazing job on "I Dreamed a Dream". My pulse quickened when the opening chords played before the preview and I held my breath as it continued on.  So moved from just that tiny clip that it has remained in my mind since that moment.  

This is what I love about music, it stays with you even after its gone. 

I will admit I have made a playlist on my phone entitled Songs to remember because I have my favorites.  I intend to listen to them over and over until they are embedded so deeply in my mind that I will always remember them.   So for fun - here are a few and I would love to hear some of yours!  Post them in the comments and lets see what songs come up. 

The songs you never want to forget.


Me: 

On My Own - Les Miserable
I Swear I'd Give My Life For You - Miss Saigon 
For Good - Wicked
Make You Feel My Love - Adele
On Fire - Switchfoot
Polyamerous - Breaking Benjamin's
Section 9 Light and Day - Polyphonic Spree
Smile - Glee Cast

I know there are many more - help me come up with them friends. 



Thursday, September 13, 2012

My Secret Service Ears...

I want to spend a little time on the hearing aids. 

Aesthetics:  They do not look like the hearing aids of the past.  I actually look like I am a secret service agent ready to pounce on an attacker at any moment.  Much like those ear pieces there is a tiny device that goes directly into my ear with a clear tube that connects to a small banana shaped contraption behind my ear.  The color is a muted pink and when my hair is down you don't notice them at all.  They are very light weight and I don't even hardly notice they are there.  I do get an annoying feeling behind my right ear sort of like when you wear your sunglasses too long but it usually fades quickly. I can't tuck my hair behind my ears anymore and sunglasses do prove to be a bit awkward but nothing I can't live with.

Sound:  When they are in everyone does seem like they are speaking through the phone or a microphone.  With adults I don't really notice it as much but with kids voices it makes a huge difference.  For those of you with children it is like when you go away and then call to talk to your child on the phone.  Their voice always sounds so young and baby like.  That is what is now sounds like to me all of the time. 

I can't turn them up or down anymore - as one friend suggested to turn down the noise on the kids, ha ha.  That is done by a computer at the hearing aid office.  The hearing aids themselves actually adjust for sound instantly.  If I walk into a large room they will immediately focus all of my sound in front of me and attempt to drown out the background noise.  It's really pretty cool.

Functionality:  Obviously I can't keep them in while in water and it is our option to take them out at night.  Other than that the maintenance is simply changing the battery once a week.  I have now cleared a spot out in my bedside table for batteries and alcohol wipes.  Embracing the change.

Personally:  I'm adjusting well.  I always know they are there but I assume that will one day go away.  I have had one fall out a couple of times but only when something brushes by my hair and it gets tangled up like an earring.  One fell out yesterday at the mall.  Good news is unlike an earring I notice right away that the sound has changed.  I don't want to lose one of these things!  I've noticed that when I have trouble hearing my hand wants to immediately go to my ear and push it in further.  This does not help any but seems to be an instinctive reflex.  Perhaps its from years of watching tv shows and movies where they push their ear piece in to hear what is being said. 

The only problem I am having with them right now is, I still can't hear in noise filled situations.  For example I worked the register yesterday at my store and in an hour I had to ask over 10 people to repeat something.  I actually had a conversation with a dear old lady about how hard it was to hear over all the talking :).  If she only knew how close our hearing was.  Along with that on Monday when I worked on our food line I could not hear my co-worker who was standing right next to me and that was frustrating.  I need to be able to hear to do my job.  It's a must. 

On Saturday we went out with friends to a very noisy bar and then club.  I struggled all night long but used the music as an excuse to make people lean in and talk directly into my ear.  FYI no one noticed the hearing aids that night and I had a blast.  It was a much needed night out, I just wished I could have heard a bit more! 

On Tuesday I have my follow up appointment with the hearing aid lady and I am going to tell her I have to move up one level and try the top of the line.  I wish I could get by with the midway for cost purposes but at this point its not an option for what I do on a daily basis. 

This past week Chris has been gone and so I have been sleeping in my hearing aids.  It makes me feel safer knowing I can hear the kids, the phone and the alarm.  It's not super comfortable, think curlers in hair ladies, but it is a necessity.  Well last night I must have gotten tired of them because sometime while I was sleeping I took them off!  I woke up and immediately knew they were not in and assumed they fell out but then a vague memory popped into my head and I saw myself taking them out and even popping out the battery to shut them off.  I chuckle to myself over it even now.  So easily we adapt.

Ok one more hearing aid story and then I am signing off to get some other stuff done while Chase naps! 

Before Chris left we were watching TV one night after the kids went to bed.  Chris went to reach for the remote and I was leaning over to get my drink and boom his hand collided with my head and more specifically my ear.  Almost immediately a voice said, "One." very loudly in my ear and  I started laughing.  "What?"  Chris asked as if I had lost my mind.  "You just caused me to hear voices in my head."  I said between laughs.  "I thought you always heard voices."  He replied smiling at me. 

I love the sound of laughter.

Wednesday, September 12, 2012

Why A Blog?

So its finally time to publish what I have written to my new blog, the one you are reading now.  It is a very private and personal thing to share about yourself so freely and openly but I wanted to share why I chose to speak about what was happening to me through this vehicle. 

  1. Writing is my passion, my outlet and it helps me heal.
  2. I wanted some place for my family to come where they could find out what was going on with me and not be embarrassed or shy to talk to me about it. 
  3. To keep people updated.  I don't have much spare time for phone calls and I don't really like the idea of this information moving from person to person because things get altered.
  4. So if anyone else is experiencing what I am going through perhaps I can be a sympathetic ear or a helpful voice.

I will continue blogging from now on.  You can sign up to get notifications of when new posts go up.

The Vertigo Wheel

Round and round I go...where I land nobody knows.

Vertigo sucks.  I can take a lot of crap but dizziness is not one of them.  In the middle of the night I woke up with my head spinning in chaos.  Instantly my pulse rate accelerated and nervousness set in.  A glance at the clock showed 4:00am.  Then I felt my husband finish his turning over and instantly knew that the slight motion of the bed had set off my vertigo. 

My gaze shifted to my bedside at the hearing aids.  It seemed odd but the difference in my balance with or without them seemed profound to me.  Perhaps I was going to have to start wearing them to bed.

That morning when I woke it was as if a Mac truck had run me over.  I was clammy, nauseous and dizzy.  I felt like I was hungover only I had not drank any alcohol.  Quickly I put in my hearing aids hoping that this would start to balance out my world.  It worked a little bit but not like I would have expected.  Slowly I hydrated myself and took my time getting around for work.  Luckily it was a nanny day and she helped out with the kids. 

As I moved slowly without interference I reflected on my health.  The feelings I was having toward this onset of spinning was quite different than anything I had felt so far with regards to my hearing.  It was a very strong concern and an immediate wanting for it to go away.

In fact this morning when the vertigo hit I began to pray immediately and my first gut instinct was asking God to make it stop.  I remember telling Him that I needed to be able to take care of my kids and that I did not have time to be ill.  Yesterday when I found out that Chase was sick, instantly I asked God to heal him and make him well.  Many times when Carter has been afraid or sick our first step is to pray for help or healing from God. 

When I started to feel better I went and got antibiotics from the doctor for a sinus infection.  I know that these meds will cure my short term illness.  I knew at the beginning of the day it was the answer I needed.  Yet even possessing that knowledge, I still had felt so much fear.  

It made no sense. 

When I heard the news that I had suffered a huge hearing loss with no explanation and no plan of treatment, I prayed nothing.  I felt no urging, no fear and yet also no strength.  I simply was. 

Even now, through all the appointments and a week and a half into it the desire to ask for prayers is limited to asking for strength.  Nothing in me is asking for or desiring healing.  I don't understand it.  I don't want to be deaf.  I don't want to change my life dramatically.  I don't want this to be something that passes onto my children.  But in spite of those things, I am not afraid. 

I am sure I will talk about this over and over.  I don't know if I will ever understand it and at some point when my hearing starts to fade I have a feeling this peace could go with it...but right now I am going to cling to it like the life preserver it is. 

Second Opinions

When I arrived at the Doctor's office I was not impressed.  Everything was old and had a musty smell.  Immediately I wondered how antiquated the actual physician was and if he was competent.  When a very elderly nurse took me to my room I felt that I had a pretty good image of what this doctor was going to look like.  With my heart rate elevated I sat in the small room looking at a very old poster of the ear.  It was so old that the paper was yellowing and I chuckled to myself.  About that moment  the doctor swung open the door. 

To say I was surprised would be an understatement.  In walked a very nice looking man about my age and very personable.  Immediately he got down to business by looking over my chart and peeking in my ears.  During the exam he offhandedly commented about the change in my hearing by simply mentioning that it would require regular three month checks. At that moment I felt like this was probably a waste of time.  I mean if his only comment was to tell me something I already knew than what was the point. 

Bringing up my hearing graph he informed me that the deterioration did not indicate a tumor as both ears were affected so similarly.  (Thank you God!)  Then he pointed to that old broken down poster to the part of the ear with little hair receptacles.  "This, " he said, "is where your hearing loss comes from.  When we are born we have all of these that we are going to have and when they die off they just quit working.  We cannot make new ones and we can't make the old ones hear again."  Nodding was my best bet here since I knew nothing of the ear until this very moment.  I attempted to process what he was saying.

 During my introspective time he looked through my paperwork again and this time took pause.  He asked if my hearing had changed since last week.  What he saw in there that made him ask that question is a mystery to me but the truth was the answer was yes.  At first I wasn't sure if it was because I now knew it was a real thing happening and so I had become more aware of it or if it truly had been an actual change.  So I admitted that the ringing in my ears was getting louder.  Immediately he stood and said we would check them again today then.  His face showed satisfaction with his plan.  I wish that news made me feel as confident.  I mean, ultimately another hearing test was what I really wanted because I want a timeline.  I want to, no need to know how fast.  So back in the booth I went.

All sound proofs rooms must look similar.  The outer shell like a bomb shelter dropped in the middle of a building.  Big thick doors and padded walls.  I love how they put toys in for the kids so that they are not afraid.  This one also provided another chair which I assume is for parents to sit with young children as they test their ears.  I thought about Carter and Chase then, wondering if this was something that would happen to them.  Would they one day lose their hearing like I was?  Would I sit with them in a room like this and comfort them while they listened?  I grew very somber and the lady asked if I was ok.  I shook my head yes but felt no.  I think she knew that was not the case but accepted my assurance and went on with what she was doing.  Oddly enough she complimented my earrings and made a little joke about it by saying, "I like your earrings and I see a lot of them in my line of work!"  I'm betting this is her attempt at cheering me up.  I obliged and politely chuckled. 

What an odd site I felt like.  Just staring at a boring beige wall twisting my fingers and getting lost in my thoughts all the while in a box in the middle of a floor in the center of a building. 

The test began and this time I knew I was failing miserably.  Too much time would go by between beeps. Dead air would hang for what seemed like an eternity.  During that silence I just sat in my mind pondering what was happening and wondering what it would be like to be as I was now, hearing nothing.   As the testing continued I could also tell that one ear was worse than the other which was something that I did not notice before.  In fact, everything about my hearing had become more noticeable to me now that I was aware.  

When I returned to a room this time there was no exam table just sofas.  I felt as if I was going to be delivered less than stellar news and that this was the "bad news" room.  I felt resigned.  Not scared, not angry and not surprised just resigned to what would be. 

The Doctor came in and confirmed what I knew, that there had already been some change to my hearing.    Typically he said that there would be some discrepancy between testing facilities but in my case it both ears dropped pretty close to the exact the same amount in each frequency. 

Every single part of my hearing had changed for the worse again and only in eight days.  Ugh. 

Getting worse in a week did not settle well with me at all and  I started to unknowingly hold my breath as I tried to focus on his recommendations.  "First, I want to see you back in a month and second I want you to have an MRI."  Ok, ok more nodding ensued.  

It was then that he said this, "I don't expect you to ever be without your hearing or your speech.  In this day and age with technology we should be able to keep you hearing the rest of your life." 

I exhaled and felt relieved to hear him say that but also a skeptical.  If my ears were losing hearing so quickly what was going to stop me from going deaf?  I guess essentially he was saying that even if I was deaf I would still be able to hear if not by hearing aids then with a cochlear implant.  A cochlear implant was something that I had already done a bit of research on.  It was something they surgically implanted to help you hear but the external hearing aid part I had now would remain.  The major difference was that with this implant I would regain hearing but have to relearn speech and certain sounds.  From what I read if done quickly after losing your hearing than it can be easier to adjust too.  For me this would be the last resort only after the hearing aids stopped providing me with the help I need.  And with all the current information in front of me this is something I am convinced will be needed.   

I left with mixed emotions.  I was happy that there was most likely no tumor and happy that technology was so advanced but sad that this was happening without rhyme or reason and scared that there was nothing we could do to slow it down.  It was then that I realized this hardware would be with me the rest of my life.  From now forward I would be Tara with hearing aids. 

I was so grateful that Chris was there waiting for me.  We drove home and I told him about the appointment and he nodded listening intently.  I could feel that he was with me on this and it made it all easier.

And surprisingly the feeling of peace that I have continually held onto throughout all of this remains even today two days later.  It is as if this is my lot in life, my destiny and I just know it.  This road of mine, a journey I will call it which seemed to be just beginning. 

Hearing Aid Day

Hearing aid day was a work day for me and I was happy about that.  I no longer wanted to focus on what was about to happen.  Instead, I knew that throwing myself into my work would push thoughts and fears away allowing me to feel normal.. 

By all accounts it was a typical day at work.  I had some hearing issues on the line and a few on the phone but I was making it through.  With each instance I became excited about my hearing aids actually happy at the prospect of being able to hear better.  When I was successful at blocking out the thoughts about how they might make me feel and how others would look at me the benefit really was attractive. 

After the lunch rush was over and things slowed down three deaf customers came in.

I noticed them instantly and felt a kindred spirit that prodded me to watch and learn.  To order they would indicate the number of meal they wanted by displaying it on their fingers.  After that my cashier attempted to ask them if they wanted white or wheat bread.  This was a futile attempt and they asked for paper.  Because I was standing there I signed the spelling of the word white and immediately he made the sign language motion for it.  I repeated it to him and shook my head yes.  Then I held up the bags of bread and let him choose.  We then did the same for the other two.  One of the men asked for no mustard.  He signed the word to me and I was happy I understood. 

In our store we take names and deliver food to tables.  In this case we always describe the people so that by the time the food is made they know who it belongs too and that they are not screaming out someones name to people who cannot hear.  It is an awkward process and in this case and on this day it felt even more cumbersome. 

When they went to sit down I immediately taught my cashier how to ask if they wanted white bread and told him to pass it on to all the cashiers.  I wished I knew more sign language so that I could have conversed with them more.  I watched them as I worked and to an untrained eye their motions seemed so sporadic.  I had no clue what they might be saying.  One of them laughed loudly, very loudly and other customers were startled.  I looked on and smiled lovingly at them and felt as if I wanted to protect them from the glances they were receiving.  Leave them alone my mind was yelling at the other guests.  But I had no room to judge - no box to stand on as I wondered to myself what will I do, how will I cope.  Am I going to be like them one day?  I admired them that day and appreciated their struggle in a whole new light. 

As I left the store and headed to my appointment I once again felt a very strong gripping fear.  No knowing what lay ahead was hard and the only thing that dissipates that is usually answers.  I wasn't sure if I would ever be getting any of those but I had hope. 

At the appointment the first thing she did was put the hearing aids on.  They were very light and felt comfortable.  I hardly noticed they were there until she spoke.  WHOA!  She sounded like she was talking to me through a microphone - all pingy and twangy and loud.  She told me that was normal and that very quickly my mind would adjust.  She was right - as half way through the hour I felt she was speaking pretty normal. 

The hearing aids are controlled by a computer.  I got to see my hearing represented on the screen.  It was in beige and the help the hearing aid was giving me was in red for one ear and blue for the other.  It pretty much validated and confirmed my testing from the week before.  In the high pitch areas the hearing aid was working its butt off while the low pitches were relatively stable.  She then said - lets quit talking and allow the noise of the room to go away and see your baseline.  I don't know how to describe that without a picture - and so I may draw one and insert it here.  In the absence of that photo though the bottom line was this:  My lower hearing still had towers representing natural sound getting in and my higher hearing was gone...completely not on the chart.  I have to say - I did not like that picture but I understood it as the demonstration went on and I was able to hear sounds I had not heard in quite awhile. 

These things really are amazing.  Expensive...but amazing.  I thanked God right then for giving me the means to leave the Dr.'s office with them in that very day.  And so armed with my new hardware I headed home. 

This was what I wrote when I got near my house:

So here I sit 50 feet from my home my kids are waiting there with my parents.  I am anxious to see them but afraid to move.  I have the hearing aids on and I feel different.  My gut hurts and I am afraid.  Up ahead I see Carter running down the street with his friend.  I start the car moving and honk to get his attention.  "Mommy!"  He yells and runs to my side of the car.  I get out and he gives me the biggest hug.  I'm home now I say to which he replies a yelling "OK" as he runs off into his friends house.  He didn't even notice them. 

He didn't even notice. 

I'm going to be ok.

And I was ok.  Later when Chris first saw me he said, "Let me see those sexy things."  I remember smiling very timidly and turning my head while thinking that he always knows what to say.  I took them out and showed him how they worked.  It was a different type of intimate moment between us, one that I will remember always.

First Birthdays

Over the next few days Chase's First Birthday party began to take all of my time and focus that was definitely a needed distraction.  As I prepped and prepared for 38 family members to come love on him and honor him I briefly worried about the noise and if I would be able to hear people properly.  I was already very rundown and tired which oddly enough, I was told by the hearing aid lady that was normal.  She said that when our hearing is so bad that we are struggling to keep up with every conversation our mind is working in overtime to help us achieve proper hearing.  Apparently our short term memory suffers a lot.  I found that to be completely true as I struggled to keep all my balls juggling at once. 

Surprisingly the party was not hard at all.  There was so much noise that no one could really hear anyone and I felt safe in that.  No one knew what was going on as I had asked those I told to keep it private for the moment.  Chase had an amazing time and lit up the room with his smile.  Each new toy a mystery and something to explore.  He was and still is obsessed with balloons and balls.  He walked and walked around carrying one with him the entire day.  Carter was a great big brother and opened all of his presents for him taking time with each one to show Chase how it worked.  I loved watching them together.  I have to say that having my husband there was priceless.  He missed Carter's first birthday while deployed so this was a really special moment.  My beautiful family celebrating together. 

After everyone left my best friend Mindy and her family stayed behind.  She is married to Chris' brother so it is a great setup.  We hung with them until the late hours of the morning.  I wish I could say that part was easy but it wasn't.  There was background music on that made it very hard for me to hear.  Later as the sun went down and I could no longer see lips the hearing slipped even further.  It was a safe place in the fact that they all knew that I was having trouble but it was filled with fear because some of my closest people were watching me struggle.  For the most part everyone was good about repeating but I could see that it was getting frustrating.  I can't imagine how I would feel on the other side of this.  From where I sit - over here in denial it's not really that bad.  But I could tell that for them it was more real.  I finally gave up contributing and even listening and just enjoyed being with them. 

I fell asleep quite peacefully that night exhausted from the festivities and a fun night with friends. 

Tuesday, September 11, 2012

Day Two

August 31st, 2012

Day two after getting the news from the Doctor that my hearing was leaving.  I woke up grumpy.  I mostly stayed somber.  I spent the day at home with Chase and for that I was grateful.  He made me smile - he made me laugh and I took in every moment with him.  Whenever things would quiet I would remember.  The ringing always reminds me.  It seems even louder now and I really hope that is not the case. 

My next appointment is Wednesday with the hearing aid woman to get the paperwork going.  Then the next day I see the specialist.  Not much longer to wait to see if I can get a few more answers - just a bit more information and a chance for me to ask him my biggest fear. 

As I put Carter down for bed this evening he decided to scare me by jumping out from behind a chair and screaming "Boo!",  in my ear.  When he did a loud PINGGGGGGG went through my ear and I had a bit of pain.  I told him that I should not be exposed to loud noises so no yelling directly in my ears and he agreed. (He is very particular about his ears :))  I then told him that mommy would be getting hearing aids in both ears and that would mean that I do not have to ask him what he was saying all the time anymore.  This made him happy but he also had the willies cause he hates anything in his ear.  I reassured him that mommy didn't mind and it would be fine. 

It's time to decide how I want to address this in prayer.  I honestly have not been able to figure that out yet. I have no overwhelming urge to ask God to take it away but in the same breath I do not want it to happen.  I think I am still in denial.  I am going to probably need to hear it from a second Doctor before it truly sets in. 

The Absence Of Sound - The Beginning

August 30th, 2012

I'm sitting at the computer patiently waiting for my 11 month old son, Chase to fall asleep for his nap.  I can hear thumping from above my head as he moves around in his crib.  A quick glance to the video monitor confirms that he is in fact, not sleeping.  Instead this beautiful boy is standing up playing with his blanket.  I know he is tired as he was rubbing his eyes and fussing in the car on the way home.  Such a wonderful sound, a babies babbling non-sense.  A sound I take for granted just like every other noise that follows me around during my day.  A sound I may one day lose altogether because...

Yesterday I was told that my hearing test showed moderate to severe high frequency loss in both ears and that this change happened in less than three years.

To put it bluntly, I went from normal hearing to that of a 66 year old in 72 months. 

During that 1095 days I spent 365 of them living as a single mother while my husband was deployed in Afghanistan.  9 months was spent cooking a very lively baby in my womb.  One month was spent grieving with friends and family over the deaths of 31 soldiers in Afghanistan, three of which were from our unit.  I spent one day crying over my seven year old, Carter's first day of kindergarten and I lost two of my grandparents less than a year apart.  I also buried my dog of 15 years.  So much had happend yet now, seeing how quickly my hearing left it felt instantaneous. 

Which moments will I hang on to the tightest?  What will change about my memories as time moves forward into uncertainty? 

Let's back track a bit to the beginning of this mystery. 

Tinnitus.  Basically the sound your ears make when there is an absence of sound.  I have had this ringing in my ears for quite some time.  It was my assumption that it was just a part of aging and nothing to be worried about.  Offhandedly I would admit to having said noise when I had trouble hearing something someone was saying.  It started out happening once or twice a month, twice a week, twice a day until finally almost twice an hour that I would have to ask someone to repeat themselves.  It was hard but I brushed it off to the sound of the ringing interfering.   So far, no one acted frustrated or put off by it and in fact the only one that mentioned it at all was Carter.  He would simply say I couldn't understand him very well.  My seven year old calling me out was enough to get me thinking that something might be going on but no where near what I needed to be motivated to have it looked at. 

The real change came as soon as my husband returned from Afghanistan.  Within the first few hours he was home he became very frustrated with my lack of hearing.  For a Chinook pilot to think my hearing was bad...well that was laughable only I wasn't laughing.   From the time he returned in March until October my problems just seemed to increase.  Both Chris and Carter began to tell me to get my hearing checked.  I promised I would and then never did. 

Personally I noticed a difference during my pregnancy and while Chris was away.  I struggled to watch TV at a low volume and follow what was being said.  That just seemed to get progressively worse until I pretty much just left it on as background noise while I used my phone or tablet.

Even after all of that I still balked.  In fact I started having trouble hearing my customers at work and my staff when they talked to me but I still thought nothing of it.  I always heard Chase crying I would reason with myself. 

The turning point came when one morning I was standing ten feet from our house alarm as it was going off and I could not hear it, not at all.  Not one tiny bit. 

Even though I saw Carter holding his hands over his ears while his lips said, "Turn it off!"  and Chase writhed in my arms to try and move away from the loud sound I stood oblivious to it all.

That was it.

That day I made the appointment still somewhat begrudgingly and felt like I was doing it to "humor" the boys. 

I will never forget the afternoon we were driving about two days before the appointment when I turned and said to Chris, "I guess I should be more worried about this hearing loss thing huh?"  Inside I was still cavalier and joking but his answer gave me pause...., "Yes."  I remember looking over at him surprised.  He was looking at me seriously and with great concern.   Inside my mind started to kick into gear but just as quickly my safety mechanism of repression took over and so I moved on.

So buried in denial was I that as the audiologist was giving me my test I thought I was acing it.  No, seriously I thought I was doing great.  I pushed and pushed the little button and even heard sounds I was surprised I could hear.  He came into the room several times and switched my equipment which at the time I thought was because he was finding no change and probably thought I was crazy.  Unfortunately when he was done he said that the reason for all the changing was because he could not believe the extent of my loss. 

Wow.  First gut punch of the day. 

I explained that sometimes all of the ringing I had interfered with my hearing and perhaps that was the reason I did so poorly.  He very gently explained that it was in fact the opposite.  That the more hearing I lost, the more ringing I would get. 

Gut punch number two. 

When the Doctor came in he checked over everything and then invited me to move from the exam table and sit on a bench.  He looked nervous as he told me that my loss was not only significant but fast.  That in three years my hearing had aged 30.  That he did not know what the cause was and that the only thing he could do was refer me on to a higher specialist than himself.  For an ENT the next step is an otological doctor, someone who only focuses on the ear.  His card says, "practice limited to diseases and surgery of the ear and related structures."  UGH.  He then repeatedly said um....um....um.... the reason they have no obvious cause was because my hearing had deteriorated equally in both ears.  Oh great.  And that his recommendation to help manage what hearing I do have was hearing aids in both ears.

Hearing Aids in both ears. (Keep breathing Tara)

Hearing Aids in both ears. (Just keep breathing)

Hearing Aids in both ears, no cause, aged 30 years in 3, hearing of a 66 year old, referral to an ear surgeon, the louder the ringing the more hearing loss, the Dr's voice repeating um....um....um...  these were the highlights that played through my head once I got to my car.  I was so shaky, so unbelievably baffled.  I still felt like I was watching a movie or that it was somehow not happening to me.  I texted my husband as I headed towards work to call me when he could.

Then I did my job which just happens to be running a fast casual restaurant.  And in that restaurant I found myself at the register and waiting on a deaf customer. 

I remember thinking, "Bring it on."  as my defiance and will took over.

When I asked what I could get her and she silently pointed, my pulse increased immediately and I began to get very nervous.  Luckily, I know how to spell in sign language and so I gleaned the needed information and sent her to wait on her food.  I then told my crew not to call her name as she was deaf and then I pointed her out to them.

I think I shook unsteadily all the way back to my office.  Was it a sign, was God preparing me?

Am I going to go deaf? 

And if so, how soon? 

This was the question of the day, the elephant in the room while I listened to the Dr, the hearing aid lady and the man who tested my ears.  It was the question that I could not find within me until that moment. My deepest fear since the beginning of this news.  The question I could not ask anyone.

That was when Chris called and I stole away outside and laid the news on him.  It was the first time I cried that day, my first admission that it was real.  He comforted me as best he could and I told him that I might go deaf and that he would have to learn sign language...he agreed and said it is definitely a possibility. 

Gut punch number three.

Chris is as non-reactive to medical diagnosis as anyone I know.  Always responding with some positive reassurance that my mind was playing tricks on me.  Usually I would hear him say, "don't blow it out of proportion, wait for a second opinion, take the medicine you will be fine."  The fact that he was not saying any of those things only further told me that this was in fact happening not in my head and not in a movie but to me rather to us, my family. 

After we got off,  my phone buzzed with a text.  It simply said, "I won't have to learn sign language I can just text you."  A smile filled my face and I felt better.  He was with me.  We were in this together. 

Later in the day I told my parents and I cried for the second and third time.  I'm not sure they really understood the implications at the time.  I was so detached as I told them even through the tears.  It was more like I was telling them a story about someone else. 

After that as I waited for Chris to get home from his flight my mind began to run and play in the vast desert of the unknown.  Lists and lists of things began to come to mind and instead of running from them I am going to record them here.

#1 - My biggest fear: 

That I will go deaf quickly.  Tell me I will be deaf in 50 years and I will say, OK!  But tell me I will have no hearing in three years and I am scared to death.

#2 - Things I will miss if I do go deaf: 

Hearing the verbal words, "I love you"
My children calling me mom
Their laughing
Their singing
Carter's adult voice
Chase's baby voice and adult voice
Music
Musical Theater
Movies
TV
Words
Having a conversation
Talking on the phone

#3 - Situations that I fear will change:

That my boys won't feel as close to me
My whole family will have to learn another language in order to talk to me
That I will feel left out
That I won't feel the same
Social gatherings will be a challenge
I will no longer be able to run my restaurant
That I will not be able to communicate with the majority of the population
That I won't be able to properly take care of Chase
That I won't want to have another baby that I cannot hear
That everyone will look at me differently
That I am going to be depressed

I cried again on my own later that day and then fell asleep early.  The news had exhausted me beyond what I could have imagined.  Chris got home and again made me smile as he rubbed my shoulders and said, "We'll deal."