Ch-ch-ch-changes!

It has been almost 2 years since I have posted.  Not sure how that happened, but there will be more activity in my blog going forward.

Life is changing at a rapid pace.  I plan to share the journey!

Stay tuned...

I'm still running...only occasionally with cabbages!

Hi.  I know, it has been a while.  I meant to update while I was recovering back at the end of January/beginning of February, but the recovery process was a bit more involved than I originally thought.  You can all beat me later.

After I was activated on February 7th...life went from 0 to 180 in moments - and it hasn't stopped yet!

Sound is wonderful and amazing and so many other words that end in -ing!  Yet, I can't lie.  I do enjoy those moments at night when I disconnect from my auditory oyster.

I watched the Avengers in 3-D, without captions, and caught a good 85% of the speech.  I don't do too well talking on the phone with just one ear, but if I have a bilateral headset, I'm golden!  I can even listen to music!  I'm loving sound!

But my hearing isn't why I finally came back to my blog.  It is the recent happenings in life that have me taking time away from work and preparing for school (I'll be back in classes in July) to write.

Yesterday was Mother's Day.  That day once a year where as children, we are to do something a bit more to show our mothers love and respect - and to say Thank you!  The day started out decently enough - but there were so many things that were just "off" about the whole day.  Sunday services at church are done by the youth group.  I enjoy the Mother's Day service.  Being able to watch and hear Alex sing was such a treat.  I was a bit put off by the message though.  Really, who preaches about death and destruction on Mother's Day?  I needed a bit of hope for the spirit - not a whole sermon of negativity.  I can only speak for myself, but the message left me needing a spiritual band-aid.  I wasn't ready to go home and love my family - what I wanted to do was tear into them.  Warm and fuzzy I was not!

Some family drama and disappointment left 2/3 of the household in tears.  Not the cute, sweet tears of happiness, but the kind that rip at the soul, shaking the core of your very being - and leaving you hollow and empty.  Uh...Happy Mother's Day?

Now, here I sit on Monday evening, absorbing the news that an old childhood friend has lost his battle with stomach cancer.  He passed away yesterday.  He was the son of my dad's buddy.  Going to the "Farm" with my dad always meant the possibility that the boys might be around.  I remember his smile and the way his eyes would twinkle with laughter and a bit of mischief!  Dirty blonde hair, blue eyes the color of a country sky, and dimples...oh those dimples!  I was the pain in the butt tomboy, following him around.  He grudgingly helped me bait my hook, taught me how to fish on the bank, and the art of skipping rocks.  I remember taking the canoe down the creek, watching for copperheads, and learning how to shoot so the wood plugs would fly out of the water!  He let me cry without making fun when we found a dead fawn in the woods mauled by coyotes and teased me without mercy for wanting to keep all the pheasant chicks! Fall fires, winter sledding, hot summer days in the fields and the annual Sandwich Fair - memories made sweeter simply because he was a childhood crush.  While I haven't seen him in years - easily decades - and I haven't talked to him in about the same amount of time, my heart grieves for his wife and sons.  For his brother, nieces, nephews, and friends.  For days long past but not forgotten.  Every memory is so precious, but my favorite of you is by the old willow tree, looking out at the field - laughing, talking, and watching the daylight slip away.  It had been a long, hot day and we were still drinking pop out of glass bottles. Your Grandpa was there and so was Mouse, Norm, you, me and always "Bert and Ernie."  Your daylight slipped away much too soon, old friend.  Rest in peace, Jerry.

Which brings me back to something one of the girls asked me through tears yesterday.  "What is the point in trying to fix things now?"

I didn't have an answer then...but I have one now. Relationships - all of them - take work.  They aren't always fair.  Sometimes we have to reach out and keep taking baby steps, knowing that some days we won't get very far.  Some days we might not even get close enough to examine the wound before being swatted away.  But there will be days when we walk in stride.  When we can find a moment to connect and cement a crack in our foundation.  There will be days when we will plant flowers and create memories that add richness to our lives.  And that is why I will keep trying.  I love you enough to see us through the rough spots that will one day lead us to contented moments where we can sit and laugh and drink soda under a willow tree and watch a sunset, or on a beach, or on a front porch.  It doesn't really matter where, I just know that it will happen one day.  Because...the daylight will slip away before we know it...and until that happens, I refuse to give up.

<3

Just a week away

I haven't blogged that much.  It is much harder to write about what I'm living than to just live my life.  I'm not very public about what I'm feeling or going through.  That's just how I'm hard wired.

So far, everything is in order.  Insurance approval.  Pain meds and antibiotics are all picked up and waiting for me.  My appointment is set up for activation on February 7th, just a day before my niece's birthday.  I have my white board and I know what clothes I'm going to wear.  Neck pillow, bed wedge, and plenty of books stocked up on my Kindle.  And a week off work...maybe.

I'm ready.  Really.  I think.

Well, that's not quite true.  I am ready.  I'm more nervous about everyone else.  Do they understand that my hearing will take time?  Do they "get" that there will be no more sound for me when I come out of surgery?  Right now I still have sound.  It's not much, but it is there.

So I pray that I'll come through okay.  That I'll be able to taste coffee, have minimal pain, and that I'll be able to run again soon.  I pray that I'll be able to hear and understand my daughters, my family, my friends.  I'd love to hear birds again and listen to singing.  The ocean. Crickets! And maybe one day I can learn a new language.

(And I've realized that I really do want to know what the people in the conference room box say! :) )

I don't know what time surgery is on Monday.  I'll find out Friday afternoon via phone call to the house and email.

It's going to be good.  The possibilities are endless.  I refuse to believe anything else.

<3

As the last year falls away...

Here we are, at the end of another year.  2011 has certainly taught some difficult lessons.  I finally took some notes so I won't repeat mistakes.  (I hope!)

I keep trying to look back and reflect on this past year, but the future beckons and I find myself looking forward instead.  Maybe that is how it should be?

Less than 24 hours and we will have started a new year - 2012.  A birthday in less than 48 hours.  Surgery in 30 days.  Stepping back into a world of sound in February.

For me, activation may end up as my "New Year."  There are so many sounds I want to hear again.  Realistically, I know that rebuilding my hearing will be a process that takes patience, persistence, and practice.  I fret a bit about what others will expect of me once I'm implanted - but that's another blog post.  Today is about hopes and wishes.

Getting to enjoying the music that Alexandra brings to life when she sings.  Listening to Victoria - because she has so much to share.  Hearing Brittany's voice again...it was the first to disappear.  Conversations with my mom, dad, and Kristin - where I don't get lost watching lips.  Getting the "inside joke" at work, instead of being the joke because I completely missed it. (Whatever "it" is!)   Traveling.  Stepping outside of the "box" again.  Running...on the road...and knowing what is around me.  Talking with friends.  Traveling and not being dependent on everyone else to tell me what's happening.  Visiting with family...I'm hoping to talk my cousins into another reunion. (I couldn't attend the last one, and the last time I saw them all, I struggled to understand what they said.)

Hearing life - and living.

2012 should be a wonderful year!!


<3

I have a date!

Happy Thanksgiving!  Oh, wait…that was last month.

Gobble Gobble!

I probably should have posted something around Thanksgiving, but the holiday was a bit harder than I thought that it would be.  Being surrounded by family certainly helped – and provided lots of opportunities to people watch!   

For the past month I have been busy doing research, creeping around on CI forums, and asking lots of questions.  I figured that if and when the time came for me to decide on a processor, I’d be way ahead of the game.

Guess what?  I’m not.

Tuesday, December 13th was my evaluation.  I really was not expecting to get the green light so soon.  I thought there would be more hoops to jump through - more time off work, more appointments to schedule.  Instead, there was testing.  Lots of testing.  There were also voices in a box speaking Swahili.  I was supposed to let my Audiologist know what words I understand.

I scored 0% with no visual cues.  (And the voices were really in English, saying things such as: "She dropped the towel on the floor.")  

Several hours later, I walked out with a date.  (Not THAT kind of date!)

Mark your calendars:  

January 30, 2012
(This is also my mom's birthday!!)

The surgery itself should take about 2 ½ hours – total, for bilateral cochlear implants.  My surgeon even assured me that he’d try to make sure the implants are even.  Nothing beats having a surgeon that understands female vanity!  I should be discharged the same day with the Princess Leia wrap, pain meds, and a pretty bad headache.  Should make for some interesting FaceBook photo uploads!

~     ~     ~

With any surgery, there are risks from the general anesthesia.  

• There is a slight chance of facial paralysis.  In order to prevent damage, nerve monitors will be placed on my face near my eyes, so when I wake up, I’ll most likely look like I was in a fist fight – and lost!
• The risk of meningitis is increased in recipients of cochlear implants, so as a preventative measure I’ll need a pneumococcal vaccine at least two weeks prior to surgery. (Finding this vaccine is proving to be a daunting task.) 
• Taste loss or altered taste is fairly common and usually only temporary – but it can be permanent. (I'm sure there are better ways to diet.) 
• Dizziness is normal (or so I'm told!) for the first few days afterwards – so I’ll be taking a full week off from work.  (This is probably one of the only times that I won't try to work while on "vacation".)  

DECISIONS DECISIONS

I also need to decide which implant and processor I want to go with since I'll be living with this equipment for quite some time.  I’ve already ruled out Cochlear America.  They’ve had some issues lately with recalls and trust is a huge thing for me.

One down – two to go.  That leaves Advanced Bionics and Med EL.

Advanced Bionics (AB) and Med EL both have a lot to offer, which is making the decision a difficult one.

Advanced Bionics -

•          Dual firing electrode array for more sound depth
•          Neptune processor can be worn off the ear (in the hair, on the arm, or in a pocket AND can be used for swimming)
•          T-Mic instead of basic T-Coil option
•          Harmony BTE (behind the ear) model is water resistant
•          2 microphones
•          3 stored programs
•          Upgradeable
•          No remote control
•          2 processors per ear (1 for use, one for backup )
•          Partnered with Phonak (a leading hearing aid manufacturer)
•         Cool skins to dress up the processor!
•          HearingJourney forums and Listening Room for practicing…well…listening!
•          Likelihood of retaining any residual hearing is very slim

Harmony Processor

Neptune - for water adventures!

~     ~     ~

This is the Opus2 w/Maestro and remote

Med EL

•          Thinner, longer electrodes for deeper pitches
•          A thin remote that works for both processors – no need to 2 remotes
•          Upgradeable
•          2 processors per ear (1 for use, one for backup )
•          Comes in multiple colors!
•          Thinnest processor on the market
•          “Out the door” activation may provide more immediate understanding
•          Moisture resistant
•          50/50 chance of retaining some residual hearing (at least until the progressive loss snags it)

o   If I did manage to retain some hearing – I wouldn’t know for 4 – 6 weeks after the surgery

There are still some questions to ask and I won't lie and say that I'm not a bit nervous...but I'm excited about the possibilities.  After all, the possibilities are endless!

I'd love to hear your thoughts!

<3

Chugga...chugga...choo-choo!

I like freight trains.  They chug along at an easy pace so the rest of the cars can keep up. I don’t even mind when I catch one while running late.  Like this morning while heading to church, Alex and I caught a train.  We counted the cars – 114 of them.  

Trains act as life’s pause button to a destination.

There are moments when I wish that I had a pause button while trying to read lips.  Aside from the fact that it is exhausting to lip read for long periods of time, most people just aren’t conscious of how they talk, or how their lips move.  And why should they be? Sound is taken for granted in the hearing world.  I know this – I used to live there.  

Lip reading without sound requires complete attention on the speaker.  If the speaker is animated, moving, and using their hands to talk…well…my ADD kicks in.  While I’m trying to watch the speech, I’m aware of the movements too.  My brain says, “Ooo! A sparkly!”   My attention is drawn to arms thrown wide, or the toss of hair.

And I’ve lost the conversation.

A pause button would be nice.  Maybe every couple of sentences I’d use it so I could quickly mull over what was said; so I’m sure that I’m still on the same topic thread and not wondering about something that I think I heard…like Aunt Velma’s painted dashboard, or why all of a sudden we’re discussing chinchillas.

No chinchillas were discussed today.

My daughters probably would appreciate a pause button too.  I’ve missed some of the important things in conversations, letting something go that should have had more discussion and over-reacting over something that wasn't said.  Misunderstanding = Not my finest moments.  Just ask them...they will tell you!

A pause might have prevented unnecessary shouting matches or some of the frustration that accompanies me saying, “What?” for the twelfth time.

Right now my hearing is pretty much off the charts.  If I'm not looking at someone talking - I don't know that they are talking.  I miss the whole “speech banana” and some other important sounds.   I found this awesome audiogram chart that gives an idea of where certain sounds register according to loudness and pitch.

And here is about where my hearing is today:

The red is my right ear and the blue is the left.  Some of this may come back after I’ve completed the current set of medications to help clear up some sterile fluid in my ears.  Like anything else in life, there are no guarantees. 

Which brings me back to freight trains and life’s little pauses.  Whether you are hearing or deaf, the listener, the one lip reading, or the one doing the talking – who wouldn’t appreciate a small pause?  It doesn’t need to be as long as a 114 car freight train, but long enough to smile, nod and gather a thought before continuing on to your destination.

After all, what’s the point of an engine hurrying on if the rest of the cargo is lost?

<3 

Every journey has a beginning

Progressive hearing loss means learning to compensate for what is lost.  When the television is too soft, the volume goes up.  Speech is no longer easy to hear so visual cues are used; lipreading is my saving grace.  Nodding and smiling is easier than asking someone to repeat what was said for the sixth time.

Yet, as long as I hear sound, I thought I could hear.

Until now.

I drove to work Wednesday morning and thought of all the sounds that have been snatched from my world - one by one.  The sound of crickets in the summer. The trill of a songbird. The fire detector's high pitched shrill. The soft hum of a fan. A child's lilting laughter.  The ringing phone.  A bell on a bicycle.  The voices of friends.  Conversations at work.   Music.  

However, I could still function in a hearing world.  I had different scenarios to handle different situations.  Email made functioning at work simple.  With the volume blasting, I could talk on the phone with someone whose voice I knew well.  Texting made personal communication and checking up on kids a snap.

Then a few weeks ago my hearing started to change, almost like the runner that I wish that I could be.  This new change took off, sprinting towards a finish line where there would be no cheering - only silence.  And this intrigued me and frightened me on so many levels.  I was curious, would I be shoved into a world devoid of sound, after spending almost 39 years hearing?

Now I'm in a quasi deaf state.  I hear some sounds - odd sounds.  I can't hear the train or the people on the train - but I can hear the computer voice announce a stop.  I hear an occasional thunk or thwack or sneeze.  Sometimes I hear a far off voice that sounds like it has been submerged under water, locked away in a room, and buried underground.  And I hear the tinnitus.  That evil ringing has been keeping me company since I was 12.  I wonder if that will go away when the rest of the sounds fade?  I'd be OK with that.

So, I'm on a journey to explore becoming a cochlear implant (CI) candidate.  My ENT is hopeful and the testing will continue.  So many factors, so many decisions, so many choices....not one easy one in the bunch.  I always said that I wouldn't choose a CI because I didn't want to lose the natural sound of the world.  What I am hearing is not natural.

I may yearn to be able to laugh at a joke without getting cues from others laughing, and to once again understand what others say and contribute to conversations.  I even long to finally hear my co-worker's voice. Beyond all of that, I have learned that there are three sounds far more important than hearing in a natural state.

Brittany, Victoria, and Alexandra.

I want to hear my daughters again.  I'd like to hear them laugh and sing.  One day (years and years and years from now...right?) I'd like to hear my grandchildren laugh and sing and call me Nana.

I want to live with sound.

Welcome to my journey.   Thanks so much for coming - it is going to be quite a ride!

<3