Tuesday, November 22, 2011

A Reason to be Happy

A couple of wonderful things happened recently.  My daughter sent me a text saying "I LOVE MY JOB!!".  She had just started a new job last Friday (Nov. 18th) after being hired on the spot the Wednesday before.  A well known independently owned coffee house in Boulder, Colorado.  She is thrilled with the opportunity to work for a coffee house that has a lot to offer her in experience.  I am happy for her.

My mother sent me an email letting me know that my sister who had her cochlear implant one month after I did called and talked to my dad for the first time in several years.  My sister mentioned to me that it had been over 5 years since she talked on the phone.  My mom was out shopping at the time she called, so my dad had the opportunity to talk to her.  My parents are thrilled that she talked on the phone.  I am happy for this momentous occasion.

I am happy for me too.  I had an adjustment on October 27th.  It was a major improvement for me.  I finally reached that turning point where I know it's better.  I've turned that corner and it's only the beginning.  I often find myself surprised by the occasional things I overhear.  Just a couple of weeks ago, I was on a flight from Colorado when suddenly I heard "... we have Coke products... we have Pepsi products ... blah, blah, blah and we have blah, blah for three dollars and blah, blah for five dollars..."  I didn't hear every word but you can tell I picked up enough to realize that they were talking about the snack cart.  Wow.  I didn't even know that they announced what was on the snack cart.  All those years of flying and I didn't know.  And here I used to agonize whether they carried the beverages I would want (other than the obvious Coke and Pepsi products) and what snacks would be available.  I would always ask for the cookie, but it wasn't always there.

I was flying back from Colorado because I had taken a road trip to Colorado with my daughter Jamie.  She had quit her job a few weeks after college graduation, took off a few months and stayed with us for a few of those weeks.  When it was time for her to leave, I rode with her back to Colorado.  We left the house at 2 in the afternoon and drove until midnight.  South on 35 down to Des Moines, Iowa then west on 80 through most of Nebraska.  It was a glorious day.  Beautiful skies all the way into the late evening hours.  We chatted and talked about many things.  As it got dark, it was hard for me to hear what she was saying, so I encouraged her to turn the music on and listen to that.  I turned my attention to my iPad and played a little Solitaire and Aliens vs. Plants.  I'm kind of hooked on Aliens vs. Plants, they are out to eat my brains.

Jamie plugged in her iPod and listened to her favorite tunes.  I began to notice that I was enjoying some of the music.  At one point, I thought a techno piece was playing and I asked her if it was and she confirmed it.  I mentioned that I actually liked the piece that was playing.  She looked at me and smiled.  We both knew that this was a big deal, this is the first time I enjoyed myself listening to music.  Without telling me, she searched her iPod and selected a song she knew that I would know.  I forget what the first song was, but when I heard it and recognized it, I smiled at her.  She went through a bunch of songs to see if I could recognize them.  Some songs I could recognize by the tune and others by the words.  We sang along with some and just enjoyed others.  Eventually, she pulled out her Joan Jett tunes and away we went.  Two girls road tripping with Joan Jett blaring on the speaker in the middle of Nebraska on a starry night.  Life is good.

Talking to people is easier than it used to be and I hear a lot more of what is said.  I think I'm distracted by the fact that they sound different but I can still hear what is being said if I just focus.  I was on a conference call with my team the other day and I could hear a lot of what was being said.  I am familiar with these voices though.  I was on a conference call a few days before that and I couldn't hear a word.  I'll be honest though, I am terrified of having difficulties on the phone so I haven't opened up the phone lines so to speak.  I am just not ready.  Slow and steady there.

Thanksgiving is just around the corner and I'd like to share what I am thankful for.  There is so much to be thankful for this year.  I know it seems obvious, but here it goes.  I am thankful that I am alive in a time where the technology exists to give me better hearing.  I am thankful for the skilled surgeons and specialists that we worked with at the Mayo Clinic.  I am thankful for my friends and family who shared this journey with me and encouraged me every step of the way.  There were times I despaired, and they reached out.  I am thankful for my daughter Jamie who came and stayed with me for a week while I was adjusting to hearing through the cochlear device for the first time.  I treasured that week with her even though my hearing was so confusing at that time.  I am thankful for my sister who took the same journey and we were there for each other. There is nothing like having someone who knew exactly what you were going through.  I am thankful for my husband who went to every single appointment with me and helped me make the best decisions.  He never complained about the 2+ hour drives each way to the Mayo Clinic or the times we had to stay overnight in Rochester in order to make our appointments the following morning.

All my love to those who were with me whether it be a few minutes or every step of the way, your kindness and encouragement means a lot to me.  An acquaintance of mine said that I must have a whole new outlook on life with this new hearing.  I do and I'm sure that as it gets better I will come to appreciate this gift of hearing.  I can't wait for the next surprise.

Monday, October 31, 2011

I went to a movie with Jamie the other day.  We went to see Footloose which I figured would be a good first movie to hear with my cochlear implant.  I didn’t want to see a movie that had too much dialogue because I knew I wasn’t going to hear every word when I don’t hear every word in normal conversation.  I figured that since this movie was a remake of the original Footloose done back in the 80’s that I had seen dozens of times, I should be able to follow it pretty well.  I did hear some lines, and noticed that some of those lines were switched between characters or used in a different setting than the original.  Call me sentimental but I just don’t think it compares to the original.  Jamie & I watched the original that night and Jamie said that there would good and bad things with both versions but prefers the remake version.  I’ll keep the original just the same.
I didn’t enjoy the music part of the new one – I just can’t tell what the beat is.  I did recognize the original Footloose a little bit, but didn’t recognize any of the other songs. 
Again, I’m frustrated by the lack of perceived improvement.  I feel like I was hearing things  “better” the “old” way.  I have to remind myself that I would have eventually gone completely deaf and this is actually a better option than that.  I also have to remind myself that it could take a year or two before I will have adapted to the new way of hearing.  It just seems like sounds aren’t sharp enough for me to understand speech without lip reading.  I do think that lip reading is a little bit easier, but …. I wouldn’t want to trade off the ability to enjoy music with easier lip reading.  I really liked listening to music. 
Music is a BIG part of everything we do.  You cannot watch TV or a movie without some music being played.  Music is a good mood elevator – and I’ve played music to suit my moods or emotional needs.  To relax, I play relaxing spa or nature sounds.  To energize, I listen to some techno or classic hard rock – to feel inspired I listen to inspirational music.  Right now, there isn’t a lot of music that appeals to me.  If all I get from this cochlear implant is the ability to read lips easier – well….. I don’t know.  But then how long would I have held out before I go completely deaf??
Overall, it’s only been a little over 4 months.  That’s barely 1/3 of the way through one year.  Patience, patience…..

Sunday, October 16, 2011

Planes, Tours and Spanish

First of all, before we get to Planes, Tours and Spanish – I’d like to follow up on my previous story where I talked about the disposable batteries running out on me during my weekend getaway at my folk’s cabin.

During my last adjustment visit with the Mayo Clinic on September 15th, we discovered that the batteries were fine.  They are highly specialized disposable lithium batteries and did not have enough power for my cochlear device at that time.  Both my implant and the external part use power from the same battery.  (Kind of freaky if you think about it, there is a miniscule amount of power being transmitted through my skin from the external device to the implant – but hey – not complaining!)  Anyway, the implant was drawing a lot of energy that the regular disposable battery was unable to provide.   It didn’t appear that disposable batteries were going to be an option for me.

Our daughter Jamie was able to join us at the Mayo and watch me go through my tests and stuff, she was very interested in what was going on.   She watched me as I was going through my series of sound tolerance testing.  Each frequency would start out loud and work down to a very quiet sound.  I would be straining to see if I could hear the next lower sound, but instead the next frequency would start at the loudest level and my eyes would sort of bug out with this unexpected change.  Jamie and my audiologist would get a chuckle out of this.

After my testing, we checked the power usage of the device and discovered that my implant with the new settings didn’t need as much power anymore and that the disposables should last me 23 hours.  So, we went from no usable power to being able to use it for almost 2 days.  Nice!  My audiologist did mention that they had another customer whose implant could not use disposable batteries either and had to buy a special portable solar panel in order to recharge his rechargeable batteries while he was backpacking in Nepal.  I DO plan to visit Nepal someday, so a portable solar panel might possibly be something that I need.  Okay, enough technical information about batteries, let’s talk about some things that happened on our vacation to Puerto Rico!  

We had to leave our house at 2:30 am for a 5:30 am flight to Atlanta on Saturday, September 24th.   Dave and Jamie never went to bed, just stayed up all night.  I couldn’t do it, but I only got about 3 or 4 hours of sleep anyway.  Sleepy eyed, we made it through security.  I didn’t encounter any difficulties with my cochlear device and equipment going through.  Yay!  (Separate story – I’m on a national “watch list” because several years ago  I accidently carried a multi-purpose tool with a knife in my carry-on luggage so I am always anxious with the security aspect of travelling – no liquids and NO sharp objects!!)  We went through those new “non-descript body image” imaging machines, Dave & I still had to go through a “pat down” after going through those.

Anyway, I had a couple of “aha” moments on our flight from Minneapolis to San Juan, Puerto Rico with a layover in Atlanta.  To entertain myself, I brought my CD player for the audio book I was going to read along with along with my iPad and my Kindle.  I pulled out my CD player and the book only to realize that I did not bring a screw to flip open my cochlear device to attach my audio cord between the device and the CD player. It can only be opened by a small screwdriver.  Bummer.  No audio book during this flight anyway.

I made use of my iPad and my Kindle.  About halfway through our the second leg of the flight I could hear one line from the pilot's public announcement.  Clear as a bell "we will arrive at our destination in one hour and 15 minutes."  I am sure that this is minor to most people, but up until now public announcements on planes was about as decipherable as the adults in a Charlie Brown show.  It was only one line, but it was ONE whole sentence!!!  I quick looked over at Dave and Jamie sitting next to me but found them both asleep.  They missed it.

While we were in Puerto Rico, we got to go down to the beach and I could hear the waves.  They sounded more normal to me than ever before.  The owner of the Bed & Breakfast that we stayed at was building a beach house right on the beach and took us to see it.  It was pretty cool.  The house is in a part of old San Juan that we had never dared venture to before.  Not very dangerous in the light of day.

All around us, I could hear the spanish language.  Voices would be right behind me and I could hear the rolling r's and trilling d's.  Of course, I don't speak spanish but it was cool to hear the distinctly spanish vowels.

We had a wonderful time in Puerto Rico, the people are very friendly and lots of fun.  It was hot and sunny.  Our inn was on the outer edge of Old Town San Juan and we were situated between the famous spanish forts El Morro and San Cristobel.  The inn was a run by artist Jan D'Esopo whose artwork covered walls and surrounded gardens.

Monday, September 12, 2011

Misadventures over Labor Day Weekend.

My family has this wonderful tradition of starting off the summer season at my folk's cabin on Memorial Day weekend.  We didn't do it this year because I had just started my recovery from surgery that weekend, but we did get up to the cabin over the Fourth of July weekend which happened to be my last weekend of disability leave before going back to work.  We also end our summer at the cabin over Labor Day Weekend and this year was no different.

It was a small group this year, our daughter Jamie was in Hawaii visiting a friend.   My brother Andy and his girlfriend were attending a music festival in Wisconsin. My sister and her girls have never been able to make it up for our extended weekend adventures.  So we met my folks up there on Friday night and my brother Corey joined us the next day.

The weekend turned out to be full of snafus and incidents.  First I woke up to a prank by my husband.  This past week I had been jittery because there was a huge barn spider living just outside my kitchen window and it's been freaking me out.  He decided to "expand" on that by putting a huge fake web and spider over the entire front wall inside the cabin.  I knew it was fake the moment I laid eyes on it and I did chuckle a little bit, my husband was disappointed that I didn't do much more than that.  My parents mentioned that they were laughing and chuckling as they watched Dave put it up and they commented that it was a good thing I had my device off because they couldn't resist laughing.  No screams to scare the wild life in the morning hours though.

That was incident number one.

My folks have solar power running a few lights in the cabin, so I had decided to bring my disposable batteries for my cochlear device to use for the weekend.  Generally, I use rechargeable batteries for my cochlear device on a daily basis.  I have two long and one short rechargeable one and I can go a whole day with two long batteries.  These batteries are charged every night for the next day.  I have a supply of disposable batteries for back up and for situations where I do not have ready access to electricity that is needed to run my battery charger.

Well, for Labor Day weekend, I had one charged short rechargeable battery on hand, but I started off using a pair of disposable batteries Saturday morning.  About two hours later, they ran out.  I panicked, because I was expecting it to last me for most of the day (it lasted longer than a day when I had used a pair of disposable batteries before).  I put in my second pair, I only had three pairs with me to last me the entire weekend.  The second pair didn't even last 2 minutes.  Now, I really panicked.  I hollered out to my husband that my disposable batteries weren't working and I didn't have any back up because they were the back up! 

My husband was able to check the power of the batteries that were left and discovered that they were bad to begin with.  I was crushed - no new sounds from nature for me this weekend.  I used my last charged rechargeable sparingly over the entire weekend.  It had about 5 ½ hours of power.  I saved it for the meal times and one game time.  After our last meal, I just left it on until it ran out.

That was incident number two.

Incident number three happened at the local hardware store in the area.  My dad needed an extension cord so he sent my mother and I into town to pick one up.  An over friendly (or overly grouchy – we can’t quite determine which it is) older gentleman was manning the store.  I couldn’t hear him, but I could tell that he was quite the chatterbox and a bellyaching fussbudget too.  He tried to help my mother choose an extension cord for what she needed.  Depending on what you need some of those cords are quite costly.  She chose one that was in the lower price range to which he hollered “your husband is going to send you right back here if you pick that one up!!”

He picked out the second most expensive one and she mentioned that she didn’t want to spend that much money and he retorted “Well then I can’t help you!!”.   They did finally find one that they could both live with.  I could see by the amused look on my mother’s face that she was having quite an encounter with this man.

I had picked up some kitchen utensils that I thought would be useful in my own kitchen.  After my mother made her purchase, the gentleman was jabbering on about something or other and I approached him to make my purchase.  Blah, blah, blah he went on and on.  I gave him my credit card.  Blah, blah, blah the back of the truck, blah, blah, blah.  Then he threw my credit card at me as if to emphasize how displeased he was with whatever was going on in the back of some customer’s truck.  The credit card hit me on my “bosoms”.   I must have looked quite shocked (how the heck would I know what just happened???), my mother said he had this look on his face like he thought “What the heck did I just do – I just threw her credit card at her bosoms!”  (My mother tells this story far better than I can)

We never explained to him that I couldn’t hear anything and after awhile, it didn’t seem worth the effort.  Sometimes it's just too awkward.

That was incident number three.

We left our usual Sunday afternoon, but even as I got home I had to put all my rechargeable batteries in the charger.  The short one took 2 1/2 hours to charge up.  I had a 60 disposable batteries, none of them were any good.  That was extremely disappointing.

At any rate, I learned my lesson.  I will always carry my rechargeable batteries with me.  The very next business day, I ordered two more long rechargeable batteries, so that I will always have plenty of charged batteries on hand.  They only cost me $216 each.  We need to address the disposable battery problem though.

Dave said that we can always plug my charger into the inverter which can be plugged into our vehicle.  So, other than when I'm in a canoe in the middle of the boundary waters or something like that, I'm good!

Tuesday, September 6, 2011

Slow and Steady

My last appointment was on August 18th and we did a hearing test on top of the regular testing.  One of these tests involves me repeating 50 single syllable words after hearing them with my cochlear device.  Prior to surgery I didn't get any of them correct with my hearing aid.  I got 42% of them right this time.  This was good news, and I needed to hear it.  I really didn't think I was doing very well with my hearing progress but this is proof that things are getting better.  It doesn't seem to translate to real life though.  I was reminded that the "access" to sound is there, it's just a matter of me sorting all of the sounds out.

At one point during my visit, the audiologist sighed and remarked offhand something like "you know, some people after a couple of months are up and running and others are slow and steady.  You're one of them (slow and steady)."  Personally, this was discouraging to me.  I am very patient with other people, but not patient when it comes to me.  I was disheartened until I realized what my problem was.  I haven't really had very much practice with listening.

I haven't talked much with people at work, and I come home to an empty house.  As a result, I haven't spent much time practicing my listening skills.  Once I realized this, I knew that this needed to change.  The very next day, I went out to buy another audio book to read along with a book.  This time I chose Michael Crichton's Pirate Latitudes.

Reading along with an audio book is fun, except its a pretty expensive activity.  Audio books cost anywhere from $15 to $50 per book.  A friend suggested checking them out at the library, so I am definitely going to give that a try.  I hope there are some good books in there.  I'd settle for a couple of classics if they're there.

I bumped into a co-worker at Barnes & Noble while I was shopping for the audio book and told her that I had just had an adjustment appointment but was discouraged with my progress.  She told me that I really needed to cut myself a break.  I know she's right, but I also know I want faster results too.

I am going to seek out conversation more whenever I can.  So, if anybody has interesting stuff to talk about, let's get together!  I need the practice!

Thursday, August 11, 2011

A Slow Progress

I was walking down the side walk of Minneapolis on my way to work one morning and suddenly I noticed so many different sounds at once.  I don't know if I have ever noticed that many things at once.  The padding of the running feet as a man ran by me hurrying to somewhere.  The roar of the bus on the other side of the street and a car thudding over the bumps in the road right by me.  I've heard these things before and they are nothing special, it's a lot to hear at one time.  The noise of the city used to all blend together into an obnoxious roar of sound.  It's a nice perk to start hearing the different things.  I can imagine that it takes a lifetime to learn to tell all those sounds apart.

It's still frustrating though that I cannot hear what is being said around me if I am not directly involved in the conversation.  At my desk, I could hear people chatting behind me but I just could not make out what they were saying.  There was a time that I could do this a little bit with my hearing aid, so it kind of bothers me that I am unable to overhear conversations.  I have to remind myself that it's only been about 2 months since activation and it takes up to a year to get used to it.  I don't feel like I have a lot of "aha" moments these days.  I just want there to be a moment where I noticed a definite improvement in human conversation.

It's hard to get used to the different levels of sound.  With the hearing aid, everything was loud, it's sole purpose was to turn up the volume on everything.  Now I can hear the soft sounds soft and the loud sounds loud (loud to a degree anyway.)  I keep wanting to "turn up the volume", but I have to remember that some sounds are soft.

One loud noise that I could do without and I've shared this story with a few of you already.  The public bathroom.  Ugh!!  I cannot stand using the bathroom at my work.  I swear every woman on that floor is taking out their aggression on everything that's in the rest room.  The toilet flushing is LOUD!!  It wasn't really that loud with a hearing aid and I haven't figured out why.  Then the soap dispenser - I swear everyone person in the bathroom is slamming down on those things!  They work!  Okay!?  They work!  Then the paper towel dispenser - every person seems to be slamming the lever to test how tough those things are.  Man!!  One time, all the stalls were busy and I just had to disconnect my cochlear device.  I just couldn't handle all that toilet flushing, soap dispenser slamming and the paper towel dispenser.  Peace!  Please!!!

Oddly I find myself being quieter.  At work, I would gently and as quietly as I  possibly can open drawers and cabinets and stuff like that.  I used to open and shut things without much thought, but with my new hearing some of these things are just unnecessarily loud.  I'm even gentle when I go out to lunch and bring something back in a paper or plastic bag.  I would carefully reach inside the bag to remove it's contents and pull it out as soundlessly as I can.  Seriously, it's quite an effort on my part.

I've talked to my mom a few times on the phone now.  It gets easier each time, I need to start practicing with others, but it kind of scares me.  I don't like to expose myself to the aggravation and frustration, but on the other hand, I need to practice at it.  At least the phone therapy helps.  My husband has a trick he likes to use with the phone, if he is trying to reach me by text via the cellphone and I am not responding, he will call the home phone which is jarringly loud.  I would check the caller ID to see who is calling then check my cellphone to see if there is a text message from that person.  It works, every time.   Other people have been using this trick now too.  If it's mom I will pick up.  She is really good about taking care to speak clearly.  She has to wait a few seconds while I frantically look for my remote control to switch my device over to telephone, but once it's found we are chatting away.  It's almost normal.

A few weeks ago, my sister was in town with her girls and we were attending a reunion with our childhood neighborhood and my dad's family on the same weekend.  My sister's cochlear implant had just been activated about a week before she came so her hearing was really new.  Both of us had challenges communicating and I admitted to someone that I was concerned about how difficult it would be to talk to people and she shot back "but you know... we LOVE you!"  What a nice thing to say, it reminded me that those who love us know how hard it has always been for us and even though it doesn't seem like it, this hard part of adapting is temporary and everyone is thrilled that at the end of this adjustment period, we will be in a better place.  (A special shout out to Mrs. Sherman here - love you too!)

I am really glad that I attended those reunions, I needed to be with those people.  People are generally really excited for us.  I look forward to the day when I am so involved in communicating with people that I forget  that it was ever hard for me to even participate.

That was always the hardest part of being almost deaf, being unable to participate in a conversation even if it's right in front of me.  I love talking to people, but I couldn't participate in group conversations.  I could be at a  holiday party or some other group setting and people are all talking and laughing and generally having a good time, but I can't hear what's being said so I feel very left out.  Lots of fake smiles on my part.  What would really bother me is when I want to know what has been said (usually because they were laughing so hard) I would ask them to repeat it and they would tell me that it wasn't worth repeating or say never mind.  This would hurt, because I took it to mean that it wasn't worth getting me involved in the conversation.  I've been shut out.  I wasn't worth the effort.  Then I would get depressed and I would rather be anywhere else but at that spot.  It's a painful place to be.

Let's not end this on a sad note.  My next adjustment is coming up quick!  I am looking forward to it!

Until next time....

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.

Monday, June 27, 2011

Activation Day - June 13th

The day I had been looking forward to finally arrived.  Monday, June 13th.  This visit would be a two part process, the initial activation on the 13th to get my ear used to hearing again, then an adjustment the next day.  Believe it or not, I was more anxious about this day than I was about surgery.  All that work and preparation, will it pay off?  What will I hear?

The appointment wasn't until 3pm, so we didn't need to travel to Rochester the night before.  We drove down that day, checked into our hotel with about an hour and a half to spare.  This time we decided to stay at the Marriott.  The room was pleasant enough and even closer to the Mayo Clinic than where we were before.  I couldn't wait!  I can't wait! 

We were pretty early getting to the first appointment, but what else could I do?  I was excited!  Of course, our wait was that much longer and my appointment was late on top of that.  But everything is worth it.  When my appointment finally came, Dave & I were led into the audiologist's office and we sat down in our chairs.  I could see the suitcase with my equipment nearby.  She came in and I was all smiles, I am ready to go.

After testing the magnet used to attach the external part to the internal part, the device was placed on.  The first magnet wasn't strong enough and the audiologist suggested that I may still be somewhat swollen from the surgery, down the road we may not need as strong of a magnet.  After testing the device on her computer, a few loud beeps came through that surprised me and caused me to jump in my chair a little.  We began testing.  She played tones in a series, she would play each tone 2 - 5 times and I would tell her how many times I heard that tone.  She said I did this very, very well.  If I could hear it, even the smallest sound, I usually counted them correctly.  Finally, she "turned it on". 

I'll be honest, I had no idea what to expect, but I didn't expect it to be so confusing.  The best way to describe my hearing is the constant pinging of a pinball machine.  I was warned that my brain needs to relearn to hear sounds in a different way.  I really, really have my work cut out for me!

She gave me a few pieces of equipment along with a couple of instruction manuals to take back to the hotel that day.  Extra rechargeable batteries and the battery charger, the remote and remote charger and the device "dehydrator" device.  All to be plugged in that night.  It's not going to be as simple as taking it off every night anymore, I have to plug all of this stuff in every night.  I hope Dave can build me a special piece of furniture to set near my bed to put all of this.

Dave and I grabbed a shuttle from the Mayo Clinic to St. Mary's hospital and walked to the Canadian Honker for dinner.  We usually hit the finer restaurants but decided to give this restaurant which was a local favorite a try.  I had a Lady Godiva Martini to celebrate my first day of hearing.  I can't gauge how loud of a place it is, but I couldn't decipher any sounds.  Dave described that it was a very talkative environment with a little music in the background.  All I could hear was a constant pinging of tones.  It was much harder to communicate with Dave.  I would find out later that my brain was working double time trying to decipher the sound at the same time I was trying to lip read.  The hearing is trying to catch up with the lip reading.  Sounds confusing, it's frustrating to say the least.

After dinner, we discovered that the next shuttle was an hour and a half away, so we decided to walk back to our hotel.  The hotel was less than a mile from the restaurant.  It was a nice way to work off some dinner calories as I was stuffed.  I was hearing things and Dave would ask me if I could hear certain things.  We were walking on a sidewalk along a busy street and I could hear the hum of the cars going by and the thumping of the tires over those fixed cracks in the road.  I was also hearing the clanging chimes at the traffic lights, this was a new sound.  Before I would only hearing clicking, this time it sounded like a clanging chime.  

The next morning, I had a follow up visit with my surgeon and he asked how things were going.  I told him that it was very confusing, but I know that I have to relearn how to hear everything.  I said "I have my ear on the prize."  That's right, he said.  It's going to take some time.  He looked over the incision and seemed to be pleased with how well it was healing.  We joked about the "haircut" he gave me during surgery, I had a "punk" look going for me.  He chuckled.  I am always looking on the bright side of things, the shaved spot and how I would look never really bothered me.

After that visit, I had my first adjustment with the audiologist.  Again, we went through a series of tones and I would count how many times I hear them.  My device was "ramped" up to permit more volume and more tones, especially those higher pitch sounds. At first, I told the audiologist that it seemed too loud and that it sounded more "bassie" than I had expected.  She made some adjustments and I thought it sounded a little better.  It is still dramatically different.  I would be practicing with this level.  Voices sounded a little more like voices than yesterday.  That day, there wasn't as many random tones firing at me.

This time, she gave me a suitcase full of devices and accessories.  It's about the size of a large laptop bag. There were a lot of parts in that bag and she went through each item with me.  Cleaning equipment, spare parts, special purposes cords, devices and an extra cochlear device in case anything happens to the one I wear.  She gave me instructions to bring the extra cochlear device and some other accessories the next time I come in for an adjustment.

Everything sounds completely different than it did before. There is a lot of noise going on and it's very confusing.  I have to relearn how everything sounds and it takes time.  In the beginning I could tell that there was music on when I heard what sounded like multiple tones chiming at once, it was completely unrecognizable.

And there it is.  I was ready to go out and hear everything.

A side note, I was thinking of my niece Ashley who was graduating from high school that day.  My daughter Jamie was texting and sending pictures to me on my phone.  I would have liked to have been there for her but this caused a schedule conflict.  Jamie had flown out to North Carolina to attend the graduation ceremony along with my parents.  I'm glad she could represent.  

Here is a diagram of the entire cochlear device. 

Sunday, June 26, 2011

The Silence

It would be 2 weeks and 5 days of silence from the day of surgery to the day of activation.  At first, I thought GREAT - peace and quiet for a change.  It's late spring and maybe I can enjoy some time outside.  But I would find that peace and quiet would turn into isolation and the weather turned out to be pretty cold and wet.  Not that I found myself depressed, I just had to work harder at keeping my spirits up.  It helped that I knew there were a lot of people rooting for me.  I can't wait for this to get better so that I can be more involved with everyone.

The first few days were spent recovering from the surgery.  I was groggy and nauseous for several days.  I found myself sleeping a lot.  I wasn't in severe pain so I didn't need any strong pain killers, but it did hurt a little and occasionally I would get a sharp jab of pain, so I took some Tylenol or Advil to keep the pain at bay.  At first, I just needed it 2 or 3 times a day, after 3 or 4 days I only needed it at night.  After a week, I didn't need anything anymore.

My mother stopped by with some delicious wild rice soup the day after I got home.  I love hanging out with my mom, so it was a nice visit.  We chatted and visited for a little while and she happened to be here when I received a beautiful flower delivery from my sister Heidi.  She will be going through her own cochlear implant journey next month.  The lilacs were in full bloom at this time, so Dave cut off a large branch and brought them in.  I sure love the smell of lilacs, it's a shame that they only bloom for such a short time.   Our lilacs are very fragrant, so they smelled wonderful!

Dave would help me with the surgery incision, we had to keep it clean and sterile.  I didn't have the energy or focus to do much of anything during those days.  I would try to read but I couldn't stick with it, the same happened to my hardanger embroidery.  I found that I could work on my crocheting project though.  I had started one several months ago, but had to put it away because there was so many other things going on.  It was nice to be able to pick it up and continue with it.  I actually accomplished a lot in those few weeks.

I wasn't on any special diet, but I found that I had no appetite for anything with strong flavors.  I stuck with oatmeal, toast with jelly, chicken noodle soup, pudding and stuff like that.  TV was the only thing I could find myself doing which surprised me because I originally thought that it wouldn't appeal to me without sound.  With close captioning, it was easy to be engaged with the show and it didn't require any serious effort to follow, just passively watch a story unfold within a short period of time.  For some reason, I found myself watching Food Network TV.  I'm a foodie without an appetite for food.  Strange isn't it?

Dave went back to work the following week, so I was home alone most of the time.  I kept myself busy working on my needlework, reading and writing.  Friends and family reached out and wrote to me.  A few stopped by.  I enjoyed getting cards & notes and staying in touch with people through facebook or email.  My cousin Ronda's kids, Emma and Tommy sent some cute notes to me that I hung on the refrigerator.  It makes me smile every time I look at them.  My cousin Rana kept in touch with me and offered to pick things up for me or take me places.  That was real sweet.

The quiet can be very isolating.  It doesn't matter whether I am alone or among others.  I'm just more painfully aware of how isolated I am when there are others around me.  I could lip read really, really well to those who were talking to me.  But I couldn't follow along with other conversations at all, especially when they get lively.  This is temporary and I know that down the road, I will be a bigger participant in things.

When I finally had an appetite to eat some decent food, I told Dave that I was in the mood for Famous Dave's and he went and picked up some take out.  I think the craving hit when I noticed that Famous Dave was competing on a Food Network show.  My husband likes to pick up a platter which gives us enough food for several days of leftovers.  I LOVE Famous Dave's baked beans, so we usually get an extra container.  That was delicious!  Calories don't count during recovery.  I had also hinted that I was craving some amaretto fudge and Dave stayed up late one night making a batch for me as a surprise.  That was a treat I treasured for some time.

We went to my folk's place to celebrate my brother Andy's birthday.  I think that was the first time I left the house since we came home from the Mayo.  I love being with my family.  I didn't mind that I couldn't hear anything, there's just something comforting being with those you love.  That night my mom and I agreed to "meet" on facebook and chat at a specified time.  This worked out pretty good, I looked forward to that time.

After awhile, I began to think that I didn't care what the new sounds sounded like as long as I could hear something!  Maybe that's the point! I am so ready for the activation.

Thursday, June 23, 2011

The Surgery

Surgery was scheduled for May 25th.  I had pre-surgery appointments with the endocrinology group and the cochlear implant team on the 24th.  Dave and I stayed at the International Hotel in Rochester this time.  Interestingly enough, so was the President of Iraq and some Kuwait diplomats so there was Secret Service all over the hotel.  This hotel was one of the luxury hotels in Rochester, our place was really nice and it was right across the street from the building most of my clinic appointments were in.  It had two rooms, a sitting area and the bedroom and two bathrooms.  A nice bouquet of bright flowers were set on a coffee table and a bowl of fresh fruit rested on a sitting table.  Very comfortable and elegantly decorated.

In the weeks leading up to surgery, I had been busy getting things caught up at work and training people to cover my tasks while I was on disability.  My former boss and current manager both encouraged me to take advantage of the disability program, that's what it's there for.  I've been working pretty much since I left high school with a one year break when Jamie was born, so it's nice to be able to take advantage of the disability program and focus on the healing and adaptation.

Oddly enough, I wasn't really nervous about the surgery.  I mean, I knew that the surgery was going to be done on my head and it is major surgery, but I was more excited about the possibilities than I was nervous about the upcoming surgery.  Let's just get that part over and done with I thought.  I completely trusted that my surgeon and his team knew what they were doing, they've done hundreds of these.

On the day before surgery, I was up early for a blood test at 7am.  We checked in with Endocrinology, the fun doctor I had before wasn't there this time but another gentleman checked me.  My thyroid has been shrinking, I could notice the difference and he could too.  He compared my neck to the pictures that were taken a couple of months ago and estimated that it shrank about 20%.  That's GREAT!  At this rate, it will be down to almost normal by the end of this year.  I am just so happy that something is happening and in a good way.  I hope that this keeps up.  He said that there shouldn't be any problem with the surgery so I was good to go.

We had a visit with a different Audiologist who was going to be working with me on my Cochlear Device.  It was more of an informational meeting, she described what was going to happen in surgery as far as the device was concerned and she offered to answer any further questions or concerns we had.  This time I was more interested in what kind of things I can expect to hear.  I was trying to clarify exactly what I will be able to hear.  It's not something that can really be quantified though.  Each individual is different. It's all about your ability to listen and perceive.  The potential is there and I'd like to think that an extremely observant person like myself will be able to maximize that potential.  Time will tell.

From the audiology department we walked to the surgeon's office on the same floor.  He also explained what was going to happy at surgery and mentioned that he has a staff of doctors that work with him but he's the one who will actually put the device in.   I mentioned to him that I wasn't really nervous about the surgery, I am already looking ahead.  The "activation" was scheduled for June 13th.  That is the day I am looking forward to.  With no further questions or concerns, we left the surgeon's office and headed to the Pre-surgery appointment.  I was weighed, measured and questioned.  In the end, I was good to go.  No problem, I am calm and ready.

Surgeries scheduled through the Mayo Clinic work a little differently than usual.  The date may be scheduled, but the time slot isn't determined until the night before surgery.  Each day, doctors enter their surgery requests at St. Mary's into the system before a certain time, then St. Mary's schedules all of the surgeries for the following day.  Everyone is supposed to call a hotline number after 8:30 at night to find out when they need to report to the hospital for their surgery.  I think this is a brilliant system but it makes it harder to have visitors when they don't know what time you're going to be in the hospital.

That night, Dave & I went to dinner at a nice restaurant and I had one cocktail with my meal.  (What else but a Cosmo!)  We had to keep an eye on the clock though.  We needed to call that surgery hotline number after 8:30pm.  I couldn't eat anything after midnight, but I could have clear liquids up until 2 hours before surgery.

Later that evening, we called the surgery hotline and found out that I was to report to the hospital at 10:00 am.  I called my parents right away to let them know as they planned on coming down to be with me.  Even now, I wasn't nervous or scared.  I'm not sure why I was so calm.  That night, I slept well.

The next morning, we woke up early, showered, dressed and headed over to the hospital.  We grabbed a shuttle bus from the Gonda Building at the Mayo Clinic to St. Mary's hospital.  We arrived pretty early, but we hadn't expected the ride to be so quick.  No matter, I was brought to my pre-op room, changed into the hospital attire and settled in for the morning.  There was one surgery before me, so I did have to wait  my turn.  My parents found me and waited along with me and Dave.  We chatted the morning  hours away.  My room had large old fashioned double hung windows that overlooked a pretty manicured lawn.  They had that old glass that is slightly warped in them, but we could still see outside.  It was raining that day, so there wasn't much activity outside other than the cars on the busy street.

10:00 came and went.  Several hours went by.  Eventually a nurse came by and mentioned that the surgery before me was scheduled for 7 am, but it was delayed by several hours so my surgery would be delayed too.  Not only was the surgery before me delayed, it looked like some complications came up.  I think it was about 3 in the afternoon when they finally came and collected me.  I am so grateful that my parents were there along with Dave & I, it sure helped to pass the hours.

Seeing that nurse come in with the gurney to lead me away to surgery made me happy.  With a smile on my face I asked "It's time?" and she confirmed that it was.  I think she was surprised to see me so ready to go.  I hugged Dave and my parents, then I laid myself down on the gurney.  I was wheeled out of the room, Dave and my parents followed me out.  My husband gave me a quick squeeze to my hand and then I was gone.  I was smiling and I never looked back, I am so ready for this.  I am not afraid of what's ahead, this is it, the beginning.

I was wheeled into a pre-op prep room.  I was hooked up to monitors and IVs.  I received a couple of visits from some very nice nurses.  The first gal was a real sweet heart.  Sometimes beautiful conversations come in the most unique situations.  I don't know how we got to the topic, but we spoke about kindness and validation.  The best gift anyone can give another human being is validation.  She asked if I needed anything and I said I didn't, I mentioned to her that I'm not really a fussy person and find it easy to be content.  She said she could tell.  We also got on the topic of disabilities.  I mentioned to her that a former boss once told me that he didn't see me as disabled, he saw me as differently abled.  As for being differently abled, God had to keep me humble some how and she thought that was adorable.

She had to leave and another nurse came by for a little bit. Later, my doctor's assistant surgeon came by and marked the ear that the surgery would be done on.  He also asked me if I had any questions or concerns.  I really didn't.  I'm sure that they must get a lot of patients that get nervous or scared.  The anesthesiologist came by and asked me some questions.  Mostly whether I had known allergies and if I ever had surgery before.  I did have my appendix removed over 20 years ago and didn't have any problems.  Within minutes, I was moved into the operating room.

I saw my surgeon in his garb waiting outside the operating room in the hallway and I smiled and said Hello to him.  I was all smiles as I got into that room.  I was introduced to everybody, moved onto the operating table, asked if I had any questions and to confirm what I was having done.  "I am having a cochlear implant in my left ear."  And then everything moved so fast, I was asleep in a matter of seconds.  I think it was around 4pm.

Hours later, I felt a nudge on my arm and I woke up.  I was super groggy, and I looked up.  I happened to see a clock and I saw that the time was 8:30pm.  I tried to force myself to stay awake, but I kept slipping back to sleep.  I was sitting up, but it was extremely uncomfortable.  I couldn't stay awake, I was extremely uncomfortable and I had some pain in my head.  At about 10, I was able to stay somewhat awake and the nurses told me that I would be spending the night in the hospital as there were no doctors available to release me until the morning.  This was actually a blessing.

There was a very large bandage tightly wrapped around my head and I don't hear a single sound.  I was groggy, a little bit nauseous and uncomfortable.  They wheeled me into the room that I would be staying in for the night and I moved onto the bed, I asked if I could lay on my side as it hurt to sit on my butt.  Dave was there waiting for me, my parents had gone home after they talked to the surgeons after I got out of surgery.  I desperately tried to sleep it off, but the pain was kind of too much and I mentioned this.  I was given some Oxycodone and Tylenol.  I got a little loopy I guess, but no longer uncomfortable or in pain.  For some reason, I got restless and I wanted to get up.  I kind of begged to be let up, eventually I asked if I could go to the bathroom.  Not that I needed to go, I just wanted to stand up.  After getting up and using the restroom, they made me go for a walk down the hallway.  My husband said I was goofy and loopy, but I don't remember this of course.  He said I was practically off and running and the nurses had to quick catch my IV up with me so that I could hold onto it.

Sometime around midnight, Dave left to go back to the hotel and I tried to sleep.  Earlier they had offered me a sleeping pill and I turned it down.  In retrospect, I wish I had taken it.  I hardly slept that night, I kept waking up every 15 - 30 minutes.  I was fighting to sleep and it was impossible.  That was one of the longest nights of my life and morning couldn't come soon enough.  In the early dark hours of the morning, I tried to have a bowl of oatmeal which did not settle very well in my stomach.  It didn't stay there if you know what I mean.

The surgeon's assistant came by in the morning to remove the head wrap.  Everything looked good and I was cleared to go home.  I ordered a breakfast which came shortly after.  A nice hot plate with a cheese and egg omelet, bacon, toast and orange juice.  I don't remember if there was anything else on my plate but it was unusually bland for me, but I just didn't have an appetite for anything with strong flavors.  Dave came by while I was eating my breakfast and I told him that I was cleared to go, we are just waiting for the hospital to fill my prescriptions.  I was given a bottle of Oxycodone and 5 days worth of antibiotics.  We were given a lot of instructions what we needed to do for the surgical incision and my general well being, I managed it all with lip reading alone.

From my room, we walked to the pharmacy to pick up my prescriptions, then we went to the car in the hospital garage.  Dave had to quick check us out of the hotel and then we drove home.  I was tired and still a bit groggy.  I leaned my head back on the headrest and wished that I had thought to bring a pillow.  But we made it home in good time and I slept.

The worst of it was over.

Tuesday, June 21, 2011

Testing At the Mayo Clinic

Last fall, I had mentioned to a couple of people close to me that I was thinking of doing the Cochlear Implant Surgery.  I didn't want to announce that I was thinking about it as I wasn't sure how I felt about it and I didn't want to defend something I wasn't sure about.  There were just so many questions going through my head.  There came a point though, when I realized how much my inability to hear was impacting my life and something needed to change.  About this time, my sister announced that she was going to do a cochlear implant.  Neither of us were aware that the other person was seriously considering it.  I confided to my husband that I wanted to pursue this and he helped me research where to go from there.   As far as I know, Cochlear Implants are only done in two places in Minnesota - the Mayo Clinic and the University of Minnesota Hospital.  We did our research on the web and decided that we were more comfortable going to the Mayo Clinic.  The Mayo Clinic was farther away but it's a nice drive through country.  I am sure that the University is a good place and their cochlear implant recipients get good results too but I am pleased with my choice.

We contacted the Mayo Clinic and they asked for a copy of the last audiology exam.  I called up my former audiologist and asked them to fax the results of my last hearing test.  I followed up with the Mayo to inquire if they had received the fax and they confirmed that they did, they also asked to do a short interview over the phone.  I mentioned that I was pretty sure that my hearing was worst than that last test and that my deafness was caused by Pendred's Syndrome.  I was pretty nervous, would they accept me as a candidate?  Was I doing the right thing? They informed me that a team would be reviewing my case and they would get back to me.  I hadn't heard anything after a week and I was pretty anxious so I called them back up.  The department secretary stated that they had just reviewed my case that morning and determined that I was a qualified candidate and they would like me to come in for further testing.  I was thrilled to move forward.  My family was already on board and I mentioned it to a few more friends and the response I got was overwhelmingly positive.  I started thinking in terms of how much my life would improve and began noticing the way I hear things.  Will this change?  Will it be better?  I was sure that some sounds had deteriorated into nothing and I hadn't noticed because the change was so gradual.  I hadn't heard the wind in the trees for years, it used to be one of my favorite sounds.  I loved that sound of the papery leaves rustling in the wind.  The pines had their own sound compared to the maples and aspens.  Will I get this pleasure back?  Will I recognize it?

My very first appointment was Monday, March 14th at 9am with one of the audiologists.  Dave & I decided to drive down to Rochester on Sunday and stay overnight Sunday and Monday night.  My husband is not a morning person, so it was easier for both of us to go down on Sunday and not worry about rushing early Monday morning.  We stayed at the DoubleTree Hotel which was within the skyway and subway system that was connected to the Clinic. I guess the signature service for the DoubleTree is giving their guests chocolate chip cookies upon arrival.  Those cookies are GOOD!  They tasted like something you would buy from a gourmet bakery.  I was very excited to be there, I couldn't wait to get the process going.  We could see the Mayo Clinic from our Hotel room at night, my journey is about to begin.  I don't think I could sleep much that night.

The first tests involved several intensive hearing tests to determine the severity of my hearing loss.  I was tested without my hearing aid and with.  I knew my hearing had deteriorated but I didn't realize how bad it was.  One of the tests is where I would repeat one syllable words by sound only, I think I used to get half of them right.  This time I didn't get even one word right.  No wonder I was struggling so hard.  I did a little better with multiple syllable words and sentences, but not much.  It was kind of a sobering experience.  I'm glad my husband witnessed it because I don't think he ever understood how bad my hearing had gotten.  Both my right ear and my left ear were tested.  My hearing loss is significantly different between the two ears, but I've always only worn one hearing aid in the good ear.  I wasn't surprised to learn that there was no usable hearing in the bad ear.  The audiologist told me that I passed the criteria for cochlear implant based on the results of my hearing test, that is to say that I "flunked" all of my hearing tests.

One of the things that stuck with me is that she told me that cochlear implant surgery would improve my ability to hear normal conversation and I won't be so exhausted from trying so hard to communicate with people via lip reading.  I would have more energy and I should not need to rely on lip reading as much.  I know most people take their hearing for granted, but I cannot imagine what a luxury this would be.  And to be able to hear much more than I do now?  At this point, I started realizing how much I was missing and how much I had to gain.  I have nothing to lose.

Until she mentioned that, I thought I was depressed, out of shape and generally a mess.  I wanted to work out, but I just didn't have the energy to do anything after work.  I couldn't even get out of the house to go for a walk which isn't that taxing.  To be honest, I was a vegetable, I would watch the clock for bed time.  I didn't feel like hanging out with people much or going out on the weekends.  I would never skip a commitment but I avoided making them in the first place.  I was always exhausted and now I know why.  I had no idea that my struggle to communicate and listen to others was taxing my energy that much but it makes perfect sense.  Lip reading takes extreme focus.  To give you some idea, have you ever taken a difficult class that required your utmost attention in order to follow it?  Did you ever notice how tired you were afterwords?  This was me on a daily basis.

That afternoon, we went through a Patient and Health Education Consultation to learn about the Cochlear Implant process.  Dave & I had already done some research and I relied on my husband's technical expertise to help me pick the device I would use.  The learning session wound up being kind of fun because there were two doctors from the Navy based out of San Diego that were observing the session.  With my permission, they observed how the Mayo Clinic does an education session for cochlear implant candidates.  Quite honestly, it was a very simple presentation and I already knew most of it based on my internet research.  After the presentation, the instructor brought out the two Cochlear devices that are currently available on the market and Dave & I along with the two doctors looked at them and tried them on.  Everyone had an opinion, but of course mine was the one that mattered.  

After the Education Consultation, we met with the audiologist again.  She also showed us the two devices and gave us some specific pros and cons. She said that bottom line, they are both excellent products and neither of them are really better than the other.   It's all about electrical pulses and how your brain interprets them.  She gave me informational packets for the two cochlear devices to take home and look over.  The next step was to visit with the surgeon and see if my ear physically qualified.

The next day, we met with the surgeon.  He was a very kind man, very smart and very patient.  He went over my hearing tests and everything that had been done up to that point.  He said that I most definitely qualified for cochlear implant surgery, but he felt that I would get the most benefit from having the cochlear implant put into my good ear.  He felt that putting it into the other ear would give me the same benefit that my current hearing aid gave me and that wasn't enough for me.  We had dozens of questions for him, especially Dave.  Dave does electrical engineering in his job, so he really could relate to the technical aspects of the process and he surely challenged the surgeon with his questions.  The assisting nurse at one point asked him if he was an engineer and I told her that he was.  She said that she figured he was because Engineers always ask a lot of questions, especially technical ones.  We all laughed.  But I am lucky that my husband is such a talented engineer, I trusted him completely to make sense out of all this and to help me pick the best device for me.

After presenting the potential risks involved, the surgeon asked if I wished to move forward.  I told him most definitely.  "I need it to be better than this in order to be able to enjoy the rest of my life," I told him.  This was a big moment for me, everything is moving forward.  We are all on board now.

I was scheduled for an MRI that afternoon to get an accurate picture of my ear.  The amazing thing is, the Mayo Clinic operates so well that I was able to get in for an MRI less than one hour later.  Later that same day, I received a vaccine shot to prevent pneumonia and meningitis.  Because the surgery is done around the skull, there is a greater risk for meningitis so they gave me a vaccine to prevent it.  

One thing that held me up though was my enlarged thyroid.  The surgeon did notice this and had some concerns.   He didn't want to proceed with the surgery unless someone looked at it and cleared me for surgery, so they scheduled an appointment with an Endocrinologist. This is another fantastic aspect of the Mayo, they do all of the scheduling for you and work with you.  I was lucky, when the nurse called over to that department to make my appointment, someone had just cancelled their appointment that Friday so there was an opening for me.  Dave and I went home and came back to Rochester Thursday night because we had a 7:00 appointment Friday morning.

Until this point, I wasn't seeing anyone for my thyroid because it was usually fruitless.  All my life, the hormone tests would come back normal baffling doctors because my thyroid was obviously large.  Most didn't want to do anything because they were afraid that the hormone levels would get messed up.  At the time that it was discovered that I had Pendred's Syndrome, the ENT Specialist suggested that I go to see someone for my thyroid and to find somebody who was familiar with it.  I had checked around and set an appointment with whom I thought was one of the best in my area and I had to wait months to get in.  I thought that the best should surely know what Pendred's Syndrome is and know what to do.  She couldn't help me, she didn't even know what Pendred's Syndrome was and was baffled why the hormone levels were normal even though my thyroid was quite large.  She suggested surgical removal if it caused me any problems with breathing or swallowing but otherwise did nothing.  I had done a lot of research on Pendred's Syndrome at that time and I mentioned it to her, she wanted me to share MY research findings with her.  I never went back, I didn't think there was any point.  

That Friday would prove to be an enlightening and fun day for me.  We were taken in by an intake specialist who looked at my thyroid and blood tests results.  She asked me several questions and asked if I was experiencing certain symptoms.  I did tell her that I was exhausted but felt that it had more to do with my hearing problems than it had to do with my thyroid.  I also made it a point to tell her that I had Pendred's Syndrome.  After the interview, she mentioned that she wanted to have another doctor take a look at me because she was not familiar with Pendred's Syndrome.  She warned me that it might take awhile because she is going to try and catch him between patients.

She came back about a half hour later and told me that he was on his way and said "I have to tell you, when I mentioned to him that you had Pendred's Syndrome, his eyes lit up and he smiled."  She said she could tell that he was very excited.  He grabbed a couple of fellowship doctors and brought them in.  He asked for my permission for them to observe, which I gave.  He felt my thyroid and the others felt it too.  He explained that I had an iodine deficient thyroid, it actually works beautifully as far as the hormones were concerned but my body lacks the ability to make a certain organic compound that attaches itself to iodine in order for it to metabolize correctly in the body, so the thyroid is working overtime to try and make this compound.  He prescribed a full doze of a synthetic hormone.  The point of this is to do the work in place of the thyroid, thereby shutting it down causing the thyroid to shrink.

He was so much fun.  I felt like a celebrity.  He really was interested and I was just so thrilled that somebody knew what I had and knew how to treat it.  The Mayo Clinic truly is the best place for me. He had been a doctor for over 25 years and had only seen Pendred's Syndrome twice before, that gives you an idea how rare it is right?   He wanted to document my progress for research purposes, so we scheduled an ultrasound and a photography session later that day.

The doctor thanked me for being such a fun and interesting case.  "Mind you," he said, "being a fun and interesting case isn't always a good thing but in your case it's not a bad thing."  I laughed, I thought that was pretty funny.  Just as he was leaving the office, he turned and asked me if I would mind if he could bring in more doctors to take a look at me.  I told him for the betterment of medicine go ahead!  I want more doctors to be familiar with this condition so that maybe someone else wouldn't have to wait over 25 years to run across a doctor that knew about this condition and how to treat it.

He brought in a group of about 6 or 7 younger doctors.  Before they came in, he told me that he would like them to try and diagnose my condition.  I can only answer yes or no questions and I can describe my symptoms but I cannot tell them what it is.  Someone did come up with it but couldn't remember how it was pronounced.  He told them that he wanted them to see this case because there is a good chance that they may never run across it again.  But if they do, hopefully they will remember this visit.  In the end, he said I was cleared for surgery and wished me luck.  He did request that I see them the day before my surgery so that they can check my thyroid to make sure things are going as expected.

After our fun visit with the Endocrinology Department, we hooked back up with the Audiologist and the Surgeon.  We ordered my cochlear device and accessories and scheduled the date of surgery.  I had only one request, I didn't want my deaf or adjustment period to fall on my daughter's college graduation which fell on May 7th.  The surgeon had a event to attend in South America shortly after that, so the big day was scheduled for May 25th.  We are go for surgery!