Thursday, July 21, 2011

The First Major Adjustment

I had my first adjustment on July 12th and I like this new hearing better than my first one.  I did a much better job deciphering the loudness level on my tests this time around, so my hearing is more normal than before.  Still different than with my hearing aid, but more like what a normal person hears.  Sounds are not quite so confusing.  Speech is a little more recognizable.  I can work with this.

I am noticing that conversations are tough for me right now.  There's so much going on all at once.  I am lip reading, learning to listen to what I am hearing and digesting what has been said all at once.  My brain doesn't always catch up.  I get so lost.  Sometimes a whole conversation will have passed before I had a chance to absorb the first sentence.  Sometimes a conversation will turn into a runaway train and I just want it to stop, just stop so I can jump off.   It doesn't help that I don't speak up and tell people when I'm lost.  I am extremely self conscious about my inability to hear and I don't like to draw attention to it.  I know that I need to be patient with myself and give myself a chance to grow into a better listener.  Most people I know would want to know when I am struggling, but I still find it hard to admit.

Earlier this week, I spent a couple of hours listening to a lot of my old tunes.  Some U2, some Journey, the Boss, some 80's - mostly rock and pop types.  Throw in a little blues and punk and that was my night.  The music feature of my device is definitely better now but music still sounds very different.  Symphony and instrumentals aren't working for me now.  I haven't figured out why.  The music I did enjoy seems to have more echo or resonance than it did before.  Before this adjustment, voices didn't stand out from the instruments but this time I can distinguish the singing from the instruments.  I can't really make out the lyrics though.  I'm singing along mostly by memory.  I am happy with this though - this is a good start.

I watched a show the other day called "It Might get Loud".  It starred guitarists Edge from U2, Jack White of the White Stripes and Jimmy Page of Led Zeppelin and The Yardbirds fame.  They were sharing stories and guitar techniques.  It was fascinating to hear how they came into playing the guitar and who or what inspired them.  They played some pieces together and WOW.  Just listening to those electric guitars.  I am in love with the electric guitar.  The electric guitar sings.  I can feel the reverberation, the echo of the strings and the lingering chords.  No wonder ears embrace this sound.  How do I describe this?  I feel like it somehow reaches into my ear and gets all the electrodes on the implant humming, then sends those chords directly to the brain.  A caressing wave of sound that gently fades away into oblivian and the last lingering tone bids a soft good bye on the soul.  It makes me want to go out and get myself an electric guitar.  Set me up with whatever it takes to achieve that sound.  I would probably never make any music worth listening to, but I would settle for hitting those chords.

July 20th marked a big day in a couple of ways.  My sister had her cochlear "activation" that day.  She's where I was a month before that.  She had four weeks of silence, so I'm sure that she is glad to be hearing something now.  It's a bit of a disappointing start though.  July 20th is big for me because I called my mom on the phone and talked to her for about 15 minutes.  This is the first time I had a conversation with anyone on the phone since before the implant surgery.  I had called Jamie right after the 12th, but I wasn't ready for the phone yet.  My mom had to talk kind of slow, but we actually had a conversation where I could hear what she said and I could respond to her.  It wasn't easy, I really had to focus on listening.  I did have to ask her to repeat a couple of sentences but overall, we were both pleased at how well I did.  She kept saying how she was so happy to hear my voice.  We had kept in touch through email and facebook chats.  With a little practice on the phone, it should get better as time goes on.  I'm not ready to talk to the world yet though, I'll just practice with my mom and my daughter for now. 

The beautiful thing about today's world is that there is so much technology to take advantage of.  I've chatted on facebook, videoconferenced on Skype, sent texts on the cell phone, typed up emails as well as share my story on this blog.  I haven't lost touch with people but there's nothing like hearing someone's voice.  A voice expresses love, warmth and happiness.  A voice has hope.  Words on a page are just words sometimes.

Sunday, July 10, 2011

The First Month

To be honest, I didn't want to blog about this part but my mom was very encouraging.  I tend to gloss over the not so good parts or skip them all together, but in reality, this is a normal part of a cochlear journey.  To be fair to myself and to you - the reader, I need to be honest and complete.  I always try to keep a positive spirit and approach everything with an open mind.  I knew that this journey wasn't going to be easy and I need to be patient with myself.  Someone once told me that I have the patience of a saint.  But for some reason, I have no patience for me and I really need to cut myself some slack, especially now.  This is a frustrating time right now.  Sometimes I just don't see how it will get better, but then something would happen and I would see the glimmer of possibility.

My mother recently shared a story with me that my sister Heidi had shared with her and this keeps me going.  Heidi has a friend who had a cochlear implant done awhile ago and they were attending a college orientation with their daughters.  The daughters are going to attend a college in the Appalachian Mountains.  At some point during the orientation speech, Heidi asked her friend if she heard all of that and her friend said that she heard everything.  Wow.  That blew me away.

Let me put that into perspective.  When I am listening to a speaker at a large gathering, I usually make an effort to sit as close to the speaker as I can and try to face them so that I can read their lips.  This can be an exercise in futility sometimes because the speaker winds up having a large microphone in their face which completely covers their lips.  I do not usually hear or understand everything that has been said, sometimes I will hear enough words in a sentence to be able to figure out what has been said.   This is largely why I would avoid this type of setting unless someone was there with me to share the information with me.  I look forward to the day where I am in some situation like that and suddenly realize "I heard that!".

Listening is a process for someone with a severe hearing loss.  First I have to really listen for the words, sometimes I hear just enough of the syllables and vowels to know which word has been said.  It takes concentration and complete focus on my part.  I can usually put enough of those words together to form a sentence, then I try to comprehend what has just been said.  I am pretty smart, so I am good at filling in the blanks, but there are times when I need more words in those blanks!  It's hard to convey how difficult it is for someone like me to listen, all I can say is that it requires serious effort on my part and this can be exhausting.

I wish I could say that I would hear all these new sounds and would ask somebody to help me identify what it is.  Sometimes it is like that.  Mostly, I could be looking directly at the source of the sound and it would be completely undecipherable to me.  So many things sound so completely different to me that I have to relearn how to put that sound into perspective.  I am really struggling with listening to people talk, the voice is there but it sounds so muffled and jumbled, I just can't seem to decipher those syllables and vowels that make up the words.  I am straining to hear them, but I cannot quite grasp them.

I can say though, that I heard a bird singing for the first time.  I was enjoying one of the few sunny days I had off and was laying out in the sun.  I heard what was obviously a bird singing.  I realized then that I could hear it in it's high frequency sound and it sounded so much more musical to me than it ever did in my entire lifetime.  I wouldn't go so far to say that it was the most beautiful sound I ever heard, just that it was prettier than before.  In the past, I either didn't hear it or it sounded like squawking. (Yes, I know, some birds only squawk anyway - like crows)  I couldn't quite make out the tune, I don't think I'm quite there yet, but this is one of the few times I saw the glimmer of possibility.

I was up at the cabin with my family over the Fourth of July.  My mother loves listening to birds and was looking forward to helping me identify birds by their song.  I didn't hear a lot of them, but suddenly one bird song came into focus and I could hear it.  Unfortunately, this bird was a first time visitor and my mom was unfamiliar with it.  She named it Gina's bird.

There are a lot of sounds up there in the woods, some I could hear and others weren't quite there.  I could hear the flap of the loon's wings against the water as it flew off the lake, but I couldn't hear it's wailing in the early morning hours.  I thought I heard the rat-a-tat-tat of a woodpecker pecking against the tree, but later thought that it sounded a lot like a loon taking off in flight, but then maybe it was a woodpecker.  No one was around to tell me differently at that particular moment in time.

The one sound that didn't sound completely different was the crackling of the fire. The snap, crackle and hissing were all there.  I could hear the snap followed by a small ember escaping from the fire.  I wonder if it hisses as the ember grows cold?  I didn't hear it.  I love campfires.  Isn't it the most beautiful thing?  A color that emits a warm glow and envelopes everyone around that fire.  Sometimes you see that same glow in the evening sun just before it fades beneath the horizon.  That same glow appears in candles.  A candle emits no warmth, but it certainly evokes the feeling.  A gentle reminder of those warm summer campfires especially during the dark hours of winter.

My surgeon said that everything makes a sound.  So even when there isn't any perceivable sound, I hear ringing tones and sounds.  Unfocused noise that I haven't been able to define.  Not yet anyway.

It just takes time.

Friday, July 1, 2011

A Big Surprise and My First Week with the CI Device

We came back home from the Mayo on June 14th.  I was hearing a lot of things but I couldn't decipher what they were.  I heard a lot of pinging tones with some things coming into "focus".  Gradually voices started to come through but they sounded very robotic and muffled.  Dave went back to work the next day commenting that he was going to have to come home later to do something.

I was bored and found myself listening to the TV, the speech was mumbled and difficult to understand.  I could follow along with the Close Captioning, but it was hard to decipher what was being said.  I sent a text  to Jamie as it was her last day in North Carolina and I wanted to know what time her flight took off and when she expected to get home.  She told me that her flight takes off around noon and she'll text me when she gets home.  I figured that she would be back in Colorado around 4pm or so.  Around 6 or so, Dave came home and walked into the living room, then someone came in behind him.

At first, I couldn't tell who it was because it was dark in the living room and the light was behind their back.  But as she came into the light I realized it was my own daughter Jamie!  I was so shocked and surprised.  I was in tears, I was so happy.  I had no idea that she was coming home to stay with us.  I kept crying and apologized for my crying but this was by far one of the happiest moments of my life.  It still makes me cry when I think about this moment.  My dear husband purchased her ticket to go out to North Carolina from Colorado for our niece Ashley's graduation and then come here to stay with us for a week.

Jamie stayed by my side the entire week that she was here.  I wish I could say that I was constantly asking what certain sounds were, but I couldn't isolate one sound from another yet.  We did try though.

That night, we went out to dinner at P.F. Chang's to celebrate the homecoming and my new hearing.  We went home after that and hung around for a little while.  We decided that we would spend part of Jamie's visit up at Lake Superior so Dave was busy trying to get us reservations somewhere along the North Shore.  Jamie was tired as it was a long day of travelling and excitement for her, this would be the first time she slept in the new bed set we put in her room for guests.  I was emotionally exhausted from this wonderful day.   

Dave went back to work the following day on Thursday and Jamie & I went shopping.  We ate lunch at  Olive Garden, then went to Barnes & Noble to pick up the books we would be reading.  We chose Stieg Larrson's "The Girl Who Played with Fire" to read together and I chose Nicholas Sparks "The Lucky One" to read along with an Audio book.  We picked up some other books too.  Both of us love to read and write.

After the books were purchased, we went to Vision World to shop for new glasses for Jamie.  She is still covered under my benefits and was due for a new pair of glasses.  Jamie loved her old frames and only replaced the lenses last time she needed new glasses, but they are pretty beat up now.  We were able to get her eyes checked, contact lenses and glasses purchased and picked up all in the same day.  While we waited for her glasses to get done, we went to Applebees and had Margaritas with Chips and Salsa.  We shopped a little around Northtown but didn't buy anything else.

That night we started reading. "The Girl Who Played with Fire" was originally written in Swedish and translated into English.  The translation was well done but all the names and places were Swedish names so we stumbled over those a lot.  Sometimes we would start giggling when we got stuck on the pronunciation.  The story is good, but it wasn't a good one for reading out loud.  I enjoyed this book, but it definitely isn't for everyone.

Friday morning, we went up the North Shore to the Superior Shores Resort in Two Harbors.  This happened to be the weekend of Grandma's Marathon, so there seemed to be a lot of traffic going North on 35W.  It was cloudy and rainy on the drive up and those clouds seemed to stay with us the entire weekend.

As we drove past Canal Park in Duluth, we could see one of the races going on.  It was cold and drizzling outside so it had to have been a challenge for those runners.  Lots of people were walking around that whole area and I was glad we weren't in the thick of it.  The highway took us through the tunnels under Duluth and onto London Road, then on to Highway 61.  We decided to stay on the Scenic route so that we could get the best view of Lake Superior.  Since it was windy, there were 3 - 5 foot waves on the lake that were crashing into the rocky shoreline.  I couldn't have asked for better than this, I didn't mind that it came with a wet weekend.

We stopped at our favorite smokehouse - Russ Kendall's in the Knife River area.  Picked up some gourmet cheese, smoked buffalo meat and a few different kinds of beef sticks.  From there we went further north into Two Harbors.

Dave almost couldn't get a room at Superior Shores but he managed to snap up the last room available that  happened to be a two bedroom with loft that came with a Jacuzzi tub and a wood burning stone fire place.  As we walked into the place, we were impressed.  It was a gorgeous place with a beautiful view of Lake Superior.  We spent the first few minutes running around the place checking out all the beautiful rooms.  The place had floor to ceiling windows that faced the lake and gave us a 180 degree view, it was a stunning view.  The master bedroom was in the loft with a comfortable King sized bed.  The other bedroom was on the main floor with a queen size bed for Jamie to sleep in, the entire outer wall in that room consisted of floor to ceiling windows that overlooked the little bay area to the left of our unit.  She would crack the window open just to listen to the waves.

We stepped out onto the deck for a few minutes to listen to the waves.  The waves were loud and crashing, but all I could hear was a roaring sound.  I couldn't make out the sound of the waves crashing against the rocks on the shore.  The sound of the waves eluded me this time, but I am sure that if we come back in the fall or a year from now, I will hear them.  And I want to come back to this very place to try again.

The decor was a mixture of old European and North Woods.  I loved it!  I could go on and on about this place but I'll let some pictures below tell the story.  The daylight was fading away, so we went to the restaurant in the resort for dinner.  It was late so there wasn't as many people in the place which made it nice and quiet for me.  We had a nice dinner.  We stopped in a little gift shop on our way out and Dave found some bath salts for the whirlpool tub.

Dave soaked in the tub that night while Jamie & I read our books by the fire place which had a nice small fire going in it.  We read a chapter of the Stieg Larsson book before going into our own books.  We were relaxed and enjoying the quiet evening.  Later we all watched a movie together, then retired for the evening.

We let the fire die down and the darkness envelope us.  I am sure that Dave and Jamie could hear the rain pelting against the roof and the waves crashing nearby, but I blissfully slept in silence.  The cochlear device comes off at night and I hear absolutely nothing.  I used to hear loud bumps and thumps, but the cochlear implant surgery destroyed most of the residual hearing that I had.  But I don't mind, it isn't that much different than before.  I've never had to struggle with the strange thumps and sounds in the night, only the discomfort of the bed.

I was the first to awaken the next morning, as I put on the CI device I could tell that I was hearing the sound of the rain against the roof.  It was raining pretty hard and I looked out at the dreary landscape against the stormy waters of Lake Superior.  Once more, I opened the door to the deck to listen for the sound of the waves, but again all I heard was a constant roaring sound.  I sat down in a comfortable chair and read books for a little while.   

Dave and Jamie were still asleep, so I filled up the tub and relaxed for awhile.  It was nice.  Eventually, I got out of the tub, got dressed and joined Jamie in the living room.  Dave got up a little later.  We decided to go out to lunch at Betty's Pies and eat the stuff we bought from Russ Kendall's for dinner.

Betty's Pies was close by, so it didn't take us long to get there.  We had to wait about 15 - 20 minutes for a table.  I spent a little time doing some Christmas shopping in their little store.  I found the perfect books for some people.  I am such a book freak, I picked one up for myself about all of the waterfalls found on the rivers that go into Lake Superior.  I think it would be fun to hit every single one of them, I've been to quite a few of them already.

When our turn came, we were led to a table in the corner of the restaurant.  It's decor is somewhat kitschy and is meant to be a throw back to the 50's and 60's.  I sat in the corner with my back to a magnetic board behind me that had a list of all the pies available for order.  I decided to take a picture of Dave and Jamie and leaned back in my chair to get a better view, but suddenly my CI device flew off my scalp and stuck to the magnetic board.  It took me a second to realize what happened and then I told Dave & Jamie what happened.  I guess I learned something that day, don't sit so close to magnet boards!!  Lesson learned!  I traded places with Jamie right away.  We all laughed, it was kind of funny.

Our meals were delicious and we enjoyed them but we were too stuffed for dessert so we ordered some pie to go.  Betty's Pies has been around since the late 50's and I've passed by this place hundreds of times but never stopped there.  I always wanted to out of curiosity, but we were usually in a hurry to get to our destination or in a hurry to get back.  It was nice to stop there, but I'll be honest, I prefer the menu and pies over at the Rustic Inn just a little bit further up north on Highway 61.

We stopped in Two Harbors to pick up some stuff for making s'mores since we had a nice fire place to make them in.  We went back to the condo and spent the rest of the day relaxing and hanging out.  We had a fire going all day.  Dave took a very long soak in the tub, he fell asleep and laid in there almost 3 hours.  Jamie took a soak later that afternoon.  I think relaxing in a hot bath with fragrant bath salts or oil is one of the most relaxing things to do.  While Jamie was taking her bath, I mentioned to Dave that I wished we had some wine to go with our cheese dinner and he quickly went into town to pick some up.

We had a delicious meal of smoked meats and cheese with crackers along with a couple bottles of wine.  We had some White Zinfandel and Pino Grigio to go with the meal.  I'm not one to worry about what should go with the meal, I just pick up what I like and drink it.  I am constantly trying new wines, I love going into a wine shop or a liquor store and asking a knowledgeable person what kind of wine I can try.

That evening we made s'mores over the fire, Dave popped some corn, and we put in a movie.  It was a bad movie and I think all of us fell asleep during various parts of it.  Once it was over, we all went to bed.  It was a cold and wet day, but we we were warm and cozy inside.  It was the perfect place to hang out and just chill.

Sunday morning we got packed and checked out before the checkout time.  We stopped in Duluth and had lunch at Grandma's Saloon.  Most of the runners had left town already so the place wasn't terribly crowded.

My hearing at this point was still very difficult.  I could barely understand what Dave and Jamie are saying.  I am hearing a lot of warbling sounds, everything sounds so different to me.

It was Father's Day that day so on the way home, we stopped by my dad's place.  He had come home from North Carolina and my mom stayed behind to help my sister with her cochlear surgery process.  We took him out to dinner at Red Lobster and my brother Andy and his girlfriend Jackie were able to join us.  It was a very nice dinner, but hard for me to participate in the conversation.  My dad enjoyed it and that's what matters.

Jamie and I spent the next couple of days reading out loud to each other from Stieg Larsson's book.  We took out a bunch of CD's and listened to various songs.  I could only recognize a few of them like Queen's "We will Rock You and Joan Jett's "I Love Rock and Roll".  The percussion is very distinctive for these songs but I really can't make out the instruments.   Most of the songs were unrecognizable to me and I can't really hear the words at this time.  It was fun to watch Jamie take delight in listening to the 80's music though.  I would hear this jumble of musical tones and watch Jamie lip sync to them.  One of her favorite pastimes in Boulder, CO is to go to an 80's night at one of the local clubs.

On Jamie's last day, we went out for an early dinner at Pittsburgh Blue, then took Jamie to the airport.  I was heart broken.  I just had the most wonderful week.  I cried when she arrived and I cried when she left. I miss her terribly but she gave me the best gift she could ever give me, the gift of time and my husband made it possible.  She devoted the entire time to me.  I will treasure this always.

The view of the living room from the dining room.

The View from the Living Room looking out at Lake Superior.

Jamie enjoying the view of the lake with a cup of coffee.