Erin

I have a dear niece who I rarely see, Erin.  She lives in Italy.  The last time my brother (her dad) and his family came to visit was about two and a half years ago.  I distinctly remember standing at the sink doing the dishes and my niece, Erin, trying to talk to me.  I was struggling trying to hear her.  She sighed (I don't have to hear THE sigh to know THE sigh, I've gotten it from many many people).  She said "Aunt Kristel, I wish you could hear me."  I responded "I know Erin, I wish I could to."  And then I cried.

My brother is coming for Christmas.  They are staying with us for three weeks and are flying in this Thursday.  I can't stop thinking about Erin.  She's 9 now.  I do not know if she remembers how bad my hearing was.  But I hope that she still wants to talk to me and I hope that I can hear her!!

Both of my brothers and their families have not seen me since getting the implant.  They and their families are so excited to see me in person and see how well I am doing.  But it makes me nervous, I hope they are not disappointed!

Regardless of how well I do, after three weeks of 17 people in my house, we'll see if I still want my CI. Hahaha!

Pandora is my Friend!

Music is so complicated.  I seriously don't understand how people can hear it clearly.  Especially when there are multiple instruments and/or voices.  It just might take the rest of my life to train my ear to music.  Good thing I've got a long life ahead of me ;)

I've learned some things about myself on this music journey.  I don't have the patience for slow songs.  I want a beat and I want the words to come fast.  Haha.  You likely would not believe it, but I have been caught listening to rap a time or two.  Pandora is AWESOME because I can follow the lyrics along with the song.  Don't worry, I skip the inappropriate ones.  I like country because it is simple.  One voice (usually) with few instruments and the songs are always about love or breakups of some sort.  I also really like Maroon 5 and Matchbox something or other.  I don't even know what genre they are.  Yep, I'm that clueless when it comes to music!  I like Taylor Swift but can only handle a couple of songs at a time.

As I type this, I'm listening to Nat King Cole Holiday station on Pandora.  I know a lot of Christmas music but the same conditions apply.  I like simple, clear lyrics that are not made complicated with a lot of instruments.  Maybe I'll be able to expand one day but for now I'm thrilled :)

If anyone out there can suggest groups that often sing with a fast beat AND clean lyrics, I would love to hear about them!

Gratitude

Tis the Season to be grateful.  Honestly, I feel grateful every day.  I remember well this time last year how isolated and anxious I felt each day.  So much has changed in the last year for me.  I rarely feel lonely.  I rarely feel anxious about communicating.  I am sooooo lucky!!!  The greatest benefit to my hearing abilities is understanding my children.  Here's just a few examples:

The other night while I was sitting on the couch in the living room talking with Evan, I heard the sweet voice of Joshua (my three year old) singing from the bathroom "I better watch out, I better not shout, SANTA CLAUS is coming to TOWN!"

While Aleah (my four year old) and I were watching a movie, Joshua was helping Evan make dinner.  I heard Joshua say "I love you daddy" but Evan was not paying attention and didn't respond to him.  Because I heard Joshua, I prompted Evan to respond.

At dinner the other night, Joshua was saying the prayer.  He expressed thanks to Heavenly Father for himself, his daddy, his mommy, grandma, Aleah, plates, cups, spoons, bowls, rice, olives, lettuce, meat, chips and water.  Then he repeated himself three times.  I heard the whole thing.  It was adorable.  The only thing he wasn't grateful for were the tomatoes.  :)

Yesterday I was downstairs sewing and I heard Aleah upstairs calling to me from her bedroom, which is upstairs.  She needed help and I was able to quickly respond.

I overheard Aleah and Joshua telling their dinosaurs "you are being naughty and have to go to time out!"  Hahahaha.

Whenever we go outside and there is snow, the kids immediately run away from me yelling "let's make snow angels" and then throw themselves down in the snow.  What I love is that I can hear them as they are running away from me.  It's amazing to hear without having to lipread.

This is a special Thanksgiving for me.  My heart is so full of thanks for all of those who helped make my journey back to hearing possible.  I'm grateful for the gift of being hard of hearing again. 

Success!

Walk day was so much fun!  I only got a couple of pictures so I will try to post some more when I get them from my fellow planners.  Above is k's krew!  We were a small team this year but we were a mighty one :)

Evan sponsored the walk.  He has been working on his own business part time.  Check him out: www.evanscoresby.com

We had over 300 walkers come and participate.  There was such a positive energy at the park.  We had a fun program with a professional entertainer-- Marky the funny guy who does tricks.  And of course we had good food :)  We had several teams, including large teams that were named after one baby in a family born deaf.  The walk unifies group from all across the hearing loss spectrum.  So fun!  We raised about $20,000.  Whoo hoo!!  Half of it goes to National HLAA for their programs and advocacy (they are the ones that got cell phones and tv's accessible to us).  The rest goes for walk expenses and local needs.  We provide assistive listening devices to those who can not afford them (those little suckers are pricey!) and other ways to help people remain connected to the hearing world.  Thanks to everyone for your support!!

Why I Walk

Our family during the first walk in 2010

This Saturday is the third annual Walk4Hearing in Salt Lake City.  Each year I have been on the planning committee to help pull off a great walk.  I am often asked why I give so much time to it when I am so busy.  Here's my answer :)

Hearing loss is isolating.  Imagine a world where voices are garbled, unclear, confusing.  It's just so much easier to stay home and isolate yourself than try to put 1000% effort into hearing a conversation that's not "required."  Required would be a conversation that is work related, health related or child related.

Hearing loss is frustrating.  For most of us with hearing loss, our brain works just fine.  We have talents and abilities we want to contribute.  But to contribute, you have to hear!  For example, I just happen to be trained as a therapist.  I know a thing or two about how to help a person who is feeling suicidal.  I remember when a friend of mine was feeling pretty low and pretty desperate.  She was in such a dire state that she was hardly speaking coherently.  The more I tried to understand what she was saying to I could help her, the less she spoke.  My ears just wouldn't work well enough for me to do a darn thing.  I walked away from that feeling so useless (by the way, she is fine now!)

Hearing loss is hidden.  Millions of people have hearing loss.  MILLIONS.  But you wouldn't know it.  Why?  Because many of us hide it.  We don't want to be "different."  We don't want to be "incompetent."  We don't want to be "less than" or considered "disabled."  So we don't learn how to accomodate.  We don't learn how to speak up.  We don't learn how to accept our hearing loss, let alone be able to see the good in it.

It's time to step up!  It's time for those of us with hearing loss to stop hiding and rejoin the world.  It's time for us to learn and access the technology that will help us to contribute.  This is why I walk.  I want other people with hearing loss to put their hair up and show their hearing aids or their cochlear implants.  I want to find those who have isolated themselves and bring them back into a community who is willing to help and accomodate them.  I want people who are afraid of technology to demo it and become comfortable with it.  Hearing loss affects our jobs, our families, our friends, our hobbies, our entertainment and our self worth.  Let's do something about it!

Please consider donating to the walk.  We are raising money to help people with hearing loss and we are GOOD at helping people with hearing loss.  Thank you for stepping up with me :)

http://hlaa.convio.net/site/TR/Teamraiser/SaltLakeCityWalk?px=1152975&pg=personal&fr_id=1996

k's krew 2010

k's krew 2011

My New Adventure

Drum roll please..........

My music training has begun!  I'm immersing myself in MUSIC.  I haven't willingly listened to music since I was 15 and obsessed with replaying the cassette soundtrack to Robin Hood: Prince of Thieves over and over and over.  Everything I do.....I do it for YOU.......

For 20 years I have avoided music like the plague.  It was noisy, distracting and got in the way of communication with people.  I never imagined I would WANT to listen to music again.

But now I am bionic.  And it is time to integrate music into my soul.  I won't lie.  It's hard.  How anyone can understand lyrics is beyond me.  But I'm beginning to learn this new language and I'm excited about it! 

Please, share with me what songs you want me to listen to.  What song would you want to introduce to a person who hasn't truly heard music for 20 years?  I'm listening.....

Mild Loss??

The greatest thing happened today. I was at an adoptive couples house doing a home study and they asked me when I started losing hearing. I told them that it's genetic and that I was four. They then said "you do very well, it must be just a mild loss?" What a compliment! They were shocked when I told them I was practically deaf. To communicate so well that people think my hearing loss is minimal is just amazing to me!

8 Month Update

I'm doing AWESOME!!  I can't even begin to describe the miracles that occur in my world of sound on a daily basis.  I can answer questions from my kids from a different room.  I can hear the loud speaker at Joann's call for the next number.  My phone comprehension has improved dramatically (still just with the neckloop but I'll take it!).  I can understand the messages of talk radio.  The stress has just melted off me these last few months.  My hearing is nowhere near normal but I feel like the richest person in the world right now :)

Unfortunately I've had some complications.  I've struggled these last few weeks with balance issues.  It is getting better but it's been pretty debilitating.  Also, the right side of my face has been twitching due to corresponding sound entering the processor.  We have remapped and remapped and examined and ct scanned and researched.  The current theory is that it is hormone related.  Go figure.  We are waiting for my hormones to stabilize.  I do think it's related because things have been improving.  Honestly, I'm hesitant to share this part of what's been going on because I don't want to scare away those considering CI's.  But the truth is that a CI is a risk and you need to go in with your eyes wide open.  I would still do it again even with these complications. 

However, these happenings have led me to postpone my second surgery.  It is just not a good idea to alter my inner ear equilibrium on the left side right now.  But even more than that, I don't feel right about it.  I wish I did.  But God has a bigger plan than what I can understand.  Trusting Him has always blessed me more than going with my own Will.  I will just keep giving praise every day for the gift I have been given and continue to work on improving that gift.

Folk Fest

Every summer, my home town has a World Folk Fest in which they invite countries from all over the world to perform traditional dances.  It's such a fun event.  I went this past week and noticed a huge contrast from last year.  Not from the performance but from my ability to hear sounds.  Music is not a strength for me yet.  I'll be working on that for awhile.  But the miracle of the night was that I actually enjoyed the music.  It didn't sound like noise.  It sounded pretty and truimphant.  And even more amazing was I heard the announcements over the loud speakers.  As the hosts introduced the dance companies, they explained the dances too.  I knew what to expect when the dancers came out.  Understanding  if it was a rain dance or a love dance or a harvest dance brought a whole new meaning to the symbolism of the dances.  It's difficult to describe how I feel about the glory of sound.  Suffice it to say that I feel like I'm the luckiest girl on earth!

"Never Give Up"

My son LOVES Dora and goes around the house chanting one of her phrases "Never Give Up."  It's really cute to hear him say it.  He's been developing this new skill to be able to replace words with others in his vocabulary.  So when he learned the song "My flag, my flag" for Independence Day, he went around the house singing the tune but changing the words to "My blanky, my blanky" or "My slide, my slide." 

The other night, I was laying down next to him reading him a book.  After the book, I started to get up.  He put his arm around me so I couldn't get up and started chanting "Never Get Up, Never Get up."  It cracked me up.  Last night, way past his bedtime, he tried getting up and I told him if I had to get up and put him back to bed I was going to shut the door.  He again started chanting "Never Get Up, Never Get Up" as he went running down the hall back to bed.  I just think he's so clever for using this phrase but changing it to meet different situations.

Then I realized something this morning.  I can hear the subtle change between "never give up" to "never get up."  That's not something I would have caught before.  I would have thought the whole time he was chanting "never give up."  I would have missed his developing skill set!  Sweet!

Debilitating Deafness

Recently I took a last minute trip to California to say goodbye to my grandma who was in ICU and not expected to live much longer.  I'm grateful I had the chance to say goodbye before she passed away.  I was able to spend quite a bit of time with the extended family, something I have not done in years.  Being with them kind of broke my heart.  I have one aunt who has normal hearing.  The entire rest of the family has profound nerve deafness.  They can not hear a thing.  They couldn't hear the doctors or the nurses or each other.  My mom and my aunts and my uncle just were lost about everything.  Sometimes they thought they heard something right but in reality they had totally misinterpreted.  And the information being exchanged was very important.  So of course everyone was super loud and resorted to writing notes back and forth on the white board.  The family could not understand me when I spoke.  I tried signing with them (I took 4 semesters of ASL when I was going to college but only remember some of it).  None of them know sign.  It was just a sad, stressful situation to be in for everyone.  When you visit someone in ICU you have to pick up a phone and talk with a nurse.  You have to answer their questions right for them to let you in.  But you have to hear questions to answer them, right?  Because of the prevalance of hearing loss in the visitors that week, the nurses stopped asking us questions.  They just opened the door for us.  I'm sad that the current technology was not available to my mom's family in their prime.  I wish I could give them all a CI.  They don't want one but I still wish I could give them one!

Grandma Virgie

My mom and the extended fam

It's really quite shocking how strong genetics are.  My sis now has a hearing loss.  My brothers don't yet but they could still develop it.  I suspect one of my nieces has a hearing loss and I'm sure my children will develop it.  We are just going to keep perpetuating this weak gene.  I truly hope, though, that my generation and those younger will be able to utilize all of the amazing technology that is available so we can still function in a hearing world.

Fred

This post is going to be dedicated to my father in law.  But before I get to that, I want to answer Melissa's question about water (yes, I am listening :).  So the implant consists of two devices.  One device is literally implanted inside my head.  It can not work without the external device on.  The external device is called the processor.  The processor attaches to my head through a magnet.  So I have to be cautious about the water when I am wearing the processor.  I don't wear the processor in the shower.  I put it on after I get ready for the day.  After it's on, it can handle being rained on or splashed on and it won't cause any issues.  Water does not affect the internal piece at all.  Does that answer?

So.  About Fred.  He's Evan's Dad.  And apparently he's hillarious.  I assume that because he's always saying things and people laugh (well, there may just be more eye rolling than laughter).  But I haven't actually known if he really is funny or not because in the 7 years I've been married to his son, I have hardly heard his actual voice.  I see his mouth open, I know something is coming out of it but I usually just stare at him and try to make out what it is he is saying.  I miss all the little things he says under his breath when we are playing Rummy.  I told Evan that I would truly know if the implant was successful if I could hear his dad (or his brothers, they pretty much have the quietest voices on the planet).  Last time the inlaws were down, in April, I was a little disappointed I couldn't hear Fred very well still.

But guess what!  Fred and Wanda (my mother-in-law who has always had the patience of a saint and has always accomodated me in every way) are here for the weekend.  And for the first time in seven years, I actually understood Fred.  Seriously!  Every time he opens his mouth and I hear him, I immediately say "I just heard you!!"  I am sure he'll be sick of it by the end of the weekend but I think another miracle has occurred.  He has a voice, a real one!!  I can hear him now!  I even heard him mutter under his breath when I kicked his trash in Rummy!!  (Just had to put that in Fred :)  I even heard him whisper!

And yes, he is funny.  But what's even funnier than what he says is how he reacts when others think he's funny.  He LOVES it!

Here's Fred and Wanda with Joshua.

I love my CI!  My quality of life has improved in a thousand ways.

One more thing.  Another miracle is that I am starting to do well on the phone.  Not directly.  But through the neckloop.  I haven't used internet captioning for a couple of weeks now.  Whoo HOOOOOOO!

The Pool

Recently I got an email from Cochlear stating that it was safe to wear the processor when near water and that it's just fine to be splashed.  As long as you don't swim underwater with the implant, it's water resistant.  The email had an example of a woman who wore her implant to water aerobics.  I've always had to take my hearing aids out when swimming and have always felt very vulnerable in the water.  I spend all of my energy looking for visual cues constantly as I can not rely on any auditory cues.  I was excited to get this email and learn about what you could do with the processor.

So I thought I would try it out.  I've now taken the kids swimming twice at our HOA pool and have worn the CI.  Holy Cow!  Water sounds beautiful.  Splashing water doesn't sound all that great.  But gliding water sounds wonderful!  It sounds peaceful and calming.  And the bubbling water in the hot tub from the jets sounds pretty great too.

It was amazing to hear my kids play in the water.  I was thrilled to hear their laughter as they splashed each other and to hear them call out "mommy, watch me" when doing something funny.  For the rest of my life, I will be able to hear the sounds of the swimming pool.  I will be able to communicate with people.  And eventually Cochlear will make a processor that you can swim underwater in.  I'm so grateful for this amazing technology.  What a blessing that I got it now, when my kids are young.  I'm not going to miss any of their lives and I'm so excited!

I'm really looking forward to the second CI now.  Sounds just get better and better. 

The Suitcase

I don't think I've ever shared pictures of my CI suitcase.  This is what came with my processor when I was activated in January (5 months ago exactly!).  The suitcase has lots of information and equipment and it can be a bit overwhelming to understand how all of it works.  Tonight I attended a meeting with a Cochlear rep to have the suitcase explained.  I had an ulterior motive for attending which I will explain at a later point.  But I'm glad I went because it was really helpful.  One of the things that the rep discussed was how high your sensitivity should be set on your remote.  I keep my sensitivity on a 1 or 2 (out of a scale of 0-20) because upping it causes distortion.  The rep said that audiologists try to keep the level at 12.  Research says at level 12 you can understand what you need to within a large range.  I've never tried to put mine any higher than 5 or 6.  So I thought I would experiment and changed my sensitivity to a 12.  It was distorted for a minute but calmed down.  So I left it on when I came home.  Of course the kids voices drove me crazy.  But I heard my phone chime with a text message from a different room.  It was very clear, as if my phone was right in front of me.  I tell you what, this equipment is so fascinating!  We'll see how long I can stand keeping it at 12!

What I Still Hope For

Everyone's been talking about this video but I have put off watching it for one reason.  Online videos are not captioned.  I rarely understand a video.  Then I got an email from pinterest today declaring this video the best of all videos on pinterest.  So I thought I would watch it and try it out.  Disappointed.....again.  I get it was a proposal.  I get it was a song.  I get all the family and friends were dancing to a song.  I have no idea what the song was or what the lyrics were or what people were mouthing.  But you know, I am pretty sure her body language said she accepted the proposal.

I really, really, really hope that one day I can understand more than just body language in a video!

p.s. Here's the video
http://pinterest.com/pin/242068548691593290/?e_t=f129ad2a082c4d38ae35a83b6a44095a&e_t_s=highlight&utm_source=sendgrid.com&utm_medium=email&utm_campaign=weekly_weekly_subject_recommendations

Happenings

Hello everyone!  I don't really have anything big to write about.  Things are good for the most part.  I don't think there are any new sounds or things that I'm hearing.  I don't always realize how well I am doing until someone points it out.  Especially Evan.  We were sitting at the computer the other night discussing finances.  He was giving me some numbers to type in.  After I typed them in, he commented that I heard him without looking at him.  I didn't even realize it but I was looking at the computer and typing in what he said instead of reading his lips.  I love moments like that.  This journey has really helped the communication in our marriage.  I'm grateful for that.

I'm the co-chair for Salt Lake City's Walk4Hearing.  This year is our third walk and our little planning group puts our souls into it.  My least favorite part is asking businesses to sponsor us.  I always ask my audiologist and I'm usually denied.  Last week, I went to see my audiologist (my hearing aid one, not the CI one) and I told him "This is the third year I've asked you to sponsor and this year I want you to sponsor us $100" instead of asking "Will you sponsor us?"  He said yes!  So maybe I should stop asking and just tell.  Haha.  Do any of you have any ideas of who I could ask to sponsor us?  I'm very open to suggestions!!

If you would like to learn more about the walk, click on this link: http://hlaa.convio.net/site/TR?fr_id=1996&pg=entry

Relay Explained

Dearest Emily and Melissa-- this post is for you :)

Relay has been around for years and years and years.  While growing up, my mom used a TTY.  She would put her handset on this little typewriter machine (yep her landline phone) and the person she was talking to would speak.  Their voice would be sent to an operator.  The operator would listen and type what was being said.  The words would display on a little screen for my mom to read.  For my mom to reply she would type back.  The operator would voice it to the hearing person on the other end.  Captioned phone calls!

Fast forward a few years.  My mom began using the Captel phone.  People complained about the TTY (ahem.... I may or may not have been one of them).  It was forever slow.  And you couldn't hear my mom's voice.  You would just hear this operator say what my mom was typing.  On the captel phone, the operator listened in still.  But my mom would speak into the handset to the hearing person.  Their reply was typed in by the captioner.  Her calls were still captioned but she was able to use her voice.  This system was better.

Now fast forward even more years when hardly anyone has a landline.  Captels are still in existence.  CaptionCall phones are supposed to be the newest and bestest at this function.  However, with the advance of the internet, came the advance of internet relay.  You can use internet relay anywhere, for free, with no needed equipment except a phone and the internet.  And yes, it's a real person who listens in on your calls.  However, you have no interaction with this person other than seeing their operator # typed at the beginning of the call.  You are listening to the call and reading what the captioner types out on your computer screen.  Since the operator has to listen, understand and type out, this obviously takes time and it makes sense there is a delay.  It's best to use this system when you can mostly hear on the phone but just need a back up for the few things you miss.  So this would be a great system for all those baby boomers who are starting to lose their hearing.

However, for me, I would probably do better with a different system.  But there is not yet one that has presented itself.

If you could hear, wouldn't it be a fun job to listen in on everyone's phone calls??  Especially therapy related phone calls?

Voice to text programs still have a ton of kinks to work out.  If you want to test it, go on youtube and select the "cc" button.  Select auto transcribe, click ok to acknowledge you understand it's not accurate and then read the captions to a video as you listen to it.  It's cRaZy!

My Repentance

After my rant last week, I've decided to forgive relay for being so ineffective.  It has, after all, saved my bacon a number of times.  So instead of complaining about what it can't do, I'm going to share some of the funny relay blunders.

For example, today, I got a referral at work for someone struggling with an addiction.  The captioner wrote that so and so is "having an issue with ducks feet."  It should have been so and so is "having an issue with pornography."

Later, someone on the phone was talking about a location and instead of captioning the location as "Mt Mahogony" the captioner wrote "girls pretty."

So I guess my areas of expertise are expanding to working with ducks feet in girls pretty :)

the SHOCK

Well guess what......we just got a letter in the mail from my insurance.  They approved my second CI surgery.  I have no idea on earth how that happened.  No idea.  I thought it would be months away.  I'm still having a hard time wrapping my head around it.  My poor husband is more shocked than I am.  He just keeps saying "I am not ready to do this again."  Haha.  Poor Evan's been through a lot with me.  So they are giving us until the end of the year to get it done.  We have some time to process and prepare for it.  No idea when we'll do it.  But we need to call our insurance and really make sure that's what they meant and what the co-pay is.  We are still paying on the last one and will be for a very, very long time.  It was more expensive than we anticipated.  All these fears have been popping up since I got the letter.  Isn't it funny how humans work?  We anticipate, we get excited, we want something and then boom, we get it and it freaks us out!  I don't feel completely ready to say goodbye to human voices yet.  But at the same time, what I get from an implant is so much more than what I get from a hearing aid.  So really, I don't want to waste a second of valuable training time to my left auditory nerve.  A new journey will soon be beginning!

Internet relay

I hate it.  How is it that technology exists that allows deaf people to hear but not to effectively caption their phone conversations?  I hate relay.  Here's an example of a relay call (now, remember, it's one sided, you can't read my part of the conversation only the other persons):

Operator#xxxxx
(cough) (speaker unclear) birth party  I'm aligned with you.  Do the math.  Place it just wondering where we are at.

Anyone want to interpret that for me?

What on earth do we have relay for if that's the quality of relay??  Grrrrr

Ok, it's not always that bad.  But 9 out of 10 phone calls I have to make, I walk away saying "I hate relay."  I'm so desperate to do better on the phone without relay.  I so envy a hearing person who just picks up their phone, puts it next to their ear and says "hello?"

This is what I do if it's a call I have to make.  I get on the internet.  Sign in to relay.  Hook up my Clear Sounds neckloop to my phone.  Turn it on.  Turn my CI telecoil on.  Turn my hearing aid telecoil on. Enter in the number I want to call on relay.  Wait for relay to call my phone.  Answer it.  Wait for relay to call and connect with the person I am calling.  Start talking slowly, giving the operator the chance to start typing, explain I am using relay.  Slowing the person down if they are talking too fast.  Asking them to repeat something or asking them a random question or stalling on something I am explaining to give the operator a chance to catch up.  Try and understand the words I am hearing while relying on relay to get what I miss, just to realize that relay is still three sentences behind what the person is saying.  The person asks me a question.  I know this not because I hear the question but because our voices change when we ask a question.  I've memorized the change.  And then of course there is a pause.  I usually respond with "hang on, just waiting for relay to catch up."  And then I answer their question.  About half of the time relay put the question in wrong.  So I wait again for the question to be clarified.  I try to answer again, hoping that I gave a satisfactory answer and they will continue to talk.  So that I can not have the pressure of answering a question.  And then I restate.  "Ok, so what I'm understand you say is ......" or "just want to make sure I caught that, you are asking me to do......"  And then the whole process starts over again!  And I get confirmation I got it right, or I am corrected or worse.  The worse is when someone repeats themselves again and I have to wait for relay and then I realize they said again the same thing I thought I understood.  Then I have to figure out if they were just simply repeating.  Or if relay got it wrong both time.  Whew.  I'm getting anxious just typing this.  By the time I am done with the phone call, my anxiety levels have skyrocketed and it takes me a few minutes to get my breathing back in check. Then, if it's work related, I then will send a follow up email or text to make sure I got the conversation right.  Is it any surprise that I have paired anxiety and the telephone in my brain?

If Evan happens to be near me when I am on the phone, he can't stand it.  He'll leave the room or else try to take over the phone conversation.  Because what he can accomplish in a 2 minute phone conversation takes me at least 15 minutes.

Now all that being said, the benefit with relay is the whole conversation is saved.  I can then go back and read it in it's entirety and almost always catch on to what I missed because it's in the context of the whole conversation not individual sentences.  And I have become super woman skilled at comprehending speech when I understand context.  And there are some voices that are getting easier for me to follow so that's definitely a bonus.

I have a caption call phone that is supposed to be more effective than internet relay.  But the phone won't work unless you have a land line and high speed internet.  We have a land line for Evan's business.  It just so happens that the company our landline is through does not support the data transfer that goes into the caption call phone.  There are two other companies we could go with.  One has chosen not to cover our street.  At all.  The other costs almost $100 a month.  For a landline????  Please you can get a cell phone plan for cheaper than that.

You know what my manager does if she needs to talk with me?  She sends me a text and says "hey Kristel, can you jump on msn or gchat?"  Way more effective!!!  My sister in law, Jenna, said that texting was invented just for me.  Though I am pretty certain other people benefit from texting, I can't help but shout praises that texting was invented during my lifetime.

Alright, I'm done with my rant.  I think I'm just tired and have had a super long week with a ridiculous amount of phone calls.  Including one that ended just a bit ago about 11:30 pm.  So now I'm going to bed and tomorrow when I wake up I'll be grateful for what I do get out of relay.

Newest Map

I've lost count of what map I'm on.  That's probably a good sign.  I'm settling into a bionic life very nicely.  Yesterday I met up with both my auditory therapist and my audiologist.  They danced an intricate dance and it was so fun to observe.  Susan (the therapist) would test me on some words, particularly focusing on the vowels that challenge me.  Then Anne (the audi) would make a tweak on my map with her computer software.  My CI would reset and Susan would test me some more.  They went back and forth for a long time.  Some of the changes made sound worse and less human so they just kept working until their voices sounded clear and until I started passing more tests.  Anne was surprised at how much the final map was different from the last one.  Apparently the pregnancy hormone wreaked havoc on my implant too.  It's so interesting that hormones could affect a foreign device in my head.  But that's just another testament that hormones wreak HAVOC.  An interesting side note, but I recently found out that most research is done on male mice.  Why is that?  Because the hormonal cycle of female mice throws the research off.  Hah!  Anyways..... being pregnant and then not did away with some of the fine tuning on my last map.  So loving that no matter what my hormones do I can ALWAYS go get a new map!

I've gotten behind on rehab these last few weeks.  But I'm getting back on track.  Still listening to the book "Think and Grow Rich" on the ipod.  I have never read it before but the more I listen to it, the more I comprehend. 

Random side note, but I feel like there's been an expectation creeping up on me that I should understand all speech.  I don't know if it's me putting this on myself or if it's from others.  If it's me, I need to reframe.  If it's others, I need to educate.  I'm doing awesome but my version of awesome and a hearing person's version of awesome is completely different.  So those who know me well, just know I'm still going to ask  you to repeat yourself.  A lot.  Hang in there with me :)  I promise, I'm working on it!

Aversions

Alright, I just have to vent for a minute.  There is a sound I hate.  I am sorry to say it too.  I really try to be grateful for all sounds.  But I'm just struggling with a particular sound.  When I hear it, I want to yank the CI off my head and throw it in front of traffic.  Yes, the sound is that annoying.  Ready for the reveal?  Shopping carts.  Yep, it's true.  I can handle how one shopping cart sounds if it's being pushed at a normal pace.  But if it's being pushed fast, it's hard on my ears and head.  However, if I am near a store employee who is pushing several shopping carts at once..........auggggggghhhhhhhhhhhhhh!  I would rather hear someone scrunching (is that a word?) up a plastic walmart bag than hearing the rattling and screeching of shopping carts (and that's saying a lot because plastic bags are really hard on me too).  When I hear it I feel like I am in the trenches of a war with the sounds of machine guns and bombs going off near my head.  I'm sure I'll adjust one day.

On a more positive note, I have a combined mapping/auditory therapy session tomorrow.  Unheard of in the CI world, my therapist and my audiologist are combining forces to give me the best Map ever!  I love my CI team.  But each Map is a new adjustment so we'll see.....

UAC

This last week I attended the Utah Adoption Conference.  It was so nice to just sit and listen and absorb all the great information.  And I got CEU's.  Bonus!  I've always loved conferences but I've had to use an assistive listening device for the last 5 years or so to get anything out of them.  Now that I'm doing so well in situations like that, I do not need an ALD.  I still sit near the front and I still focus on the speaker's face so I can lip read but the volume of the speakers voice is usually enough.  I listened to about 8 different speakers and did excellent with 7 of them.  One not so much but my coworkers got all the info so I can glean from them.  It's just so nice to sit and listen without having to work as hard to hear.  However, I'm still so far from hearing if noise is introduced.  During one of the conference sessions, a row of DCFS workers sat behind me and they became disruptive about half way through the session.  They laughed and joked and made fun of the speaker.  It was all very unprofessional and very rude.  And I couldn't figure out how to make my brain silence them and continue to focus on the speaker.  Looking back, I wish I would have just turned around and put them in their place.  In the moment, I was using all my energy to try to understand the speaker.  I am really looking forward to getting my second CI.  I think that is what I need to be able to do well in noisy situations.  The CI team submitted the request to my insurance last week I think.  So in two to three weeks, we anticipate an answer and then will work on an appeal (we are assuming the request will be denied).

Loss

I had a miscarriage this week.  I was ten weeks pregnant.  What's ironic is that for the last couple of months I have been marvelling how pregnancy has not caused more hearing loss.  I've been amazed that my hearing has not been affected at all by the hormonal shifts.  What I did not realize is that loss was happening but it was loss of the baby, not loss of hearing.  No matter what kind of loss, there is great meaning to be found in it.  Suffering without purpose is just suffering.  Suffering with purpose is meaningful.  I have great trust in my Heavenly Father and know He will help me use this loss to make me more worthy of His kingdom.  If there is a silver lining to be found it is that I have been reminded of how much He loves me.  And a huge blessing as I've gone through all the procedures is that I've been able to hear all the medical staff, even with their masks on, meaning I haven't needed to read their lips.  What a blessing.  I appreciate all of you who have been praying for me this week.  I have felt those prayers.

The Lorax

Have any of you seen a movie lately?  The sound system in the Cinemark today was AMAZING!!!!!!!!!!  I couldn't believe it.  It's my first movie with a CI.  I fell in love with the theater today.  Movies didn't do much for me before.  But wow oh wow, I want to go see another one.  The sound was full and rich and deep and just WOW!  Took the kids to see The Lorax and I was just blown away the second the sound started.  And what I was not able to hear I was able to catch with my handy dandy captiview caption device that I can now use for ANY movie at ANY Cinemark.  I LOVE technology!

3 Months Post Activation

I had these plans to write an anniversary post on April 5, which marked 3 months since activation.  But the kids and I got so sick!  Everything got off track.  Today is Easter and we barely got our act together to color some eggs and fill the baskets last night.  I think though we are starting to be on the mend.

So...back to my point.  I wanted to make note of how I am hearing 3 months out.  My friend came over tonight and she was amazed I heard Aleah from across the room say "when I wake up I want a vitamin."  Overall I am doing AWESOME!  When I sit and think about the miracles that have lined up for me, I get overwhelmed with gratitude.

My 3's list:

My 3 favorite sounds-- Listening to the kids breathe, the chime notifications on my phone, and the sounds of cooking.

My 3 favorite hearing moments-- Catching Evan ordering an expensive meal from the drivethrough when we had planned to just order from the value menu (it was hillarious when I caught him too, he still can't believe I heard that), my daughter calling me from her bedroom with me responding and answering her question naturally without even realizing a miracle had just taken place, and hearing the comments from the women at church when I taught for the first time without my assistive listening device on.

My 3 biggest surprises-- Already not needing my extra assistive listening devices, catching some words on television without captioning and how quickly I am gaining confidence in social settings.

My 3 hardest hearing environments-- The phone, any place that has noise (though I can now hear okay when it's just my kids making their normal noise) and doctor's offices (with no carpet to absorb sound, it's like a bouncing echo nightmare in those little offices).  My Audi and therapist think that with practice and map tweaking I can do all these areas one day but they think the 2nd implant is what will make the biggest difference here.

The 3 words I would use to describe my CI journey thus far-- Hard, Miraculous and Healing.

Super Saturday

One of my co-workers noted that I "seem different."  She says she never would have pegged me as an anxious person but that now she realizes I am much less anxious.  I think she hit it head on.  Over the last 3 years, my anxiety has increased across the board.  But I hid it well.  I did not advertise the fact that I avoided social gatherings, avoided talking to people at church and even avoided talking to store clerks or bankers or doctors or insurance agents or whoever.  But the truth must come out.  I was an avoider.  Unfortunately, I didn't realize how much I let my insecurity get in the way of giving people the chance to accomodate me.

Letting go of my insecurity of "what if I can't hear them?" has been incredibly freeing.  It no longer stresses me out to go places and talk to people.  Case in point.  This morning I went with my amazing friend, Tara, to get our Bountiful Baskets.  This was my first time.  3 months ago I wouldn't have signed up because it was a new environment and I had crippled myself too much to do anything "new."  The familiar was challenging enough.  I just was not going to even try "new."

Well, for good reason I avoided Bountiful Baskets.  They give you your produce in the gym.  THE GYM.  Gyms are nightmares for people with hearing loss.  Nothing in a gym absorbs sound therefore sound bounces, bounces, bounces everywhere but to your ears.  So I knew automatically I wouldn't hear well when I got there.  But guess what!  I didn't care!!  While walking toward the exit, a woman asked me a question.  I couldn't understand her for the life of me.  She repeated herself.  I missed it again.  I explained I had a hearing loss.  She repeated.  Finally, I got a few words so I said back what I heard "you want my trash?" She laughed and said "sometimes I don't think I speak English."  I assured her it was the gym, not her.  Bless her heart for continuing to try.  She probably regretted stopping me by this point.  Lol.  What she was asking was "Do you have room in your trash at home for this box?"  The funny thing is that I didn't.  So she just wasted all that energy and 5 minutes of her life trying to communicate with me.  But the progress for me was I did not feel incompetent.  I was fine.  It's a gym.  I have a hearing loss.  It is what it is.  As I was walking away, I realized I hadn't turned to Tara to rescue me and I didn't feel insecure about the situation.  It was a very freeing feeling.  Getting a CI is giving me a life back that I didn't fully realize I had lost.  I'm so thankful.

Kiss of Deaf

As crazy as this sounds, it's one of those things where I think we should be "better safe than sorry."  This article says that kissing someone's ear can cause hearing loss.  For your viewing bafflement:
Kiss of Deaf

Del Taco

I know this might sound a little riduculous but when you are used to faking your way through much of life, you learn to appreciate every moment you don't have to fake.  One such moment occured in Del Taco tonight.  The kids got free kids meal coupons from their dentist.  When I placed their order, the cashier got the order wrong.  As she was repeating it back to me, I realized she only understood me ask for one kids meal instead of two.  I corrected her and gave her the coupons.  She told me they couldn't accept both.  I disagreed (kindly) with her and she checked with her manager.  Her manager approved it.  The kids and I went and found a table to sit at.  I heard an employee call out #41.  I went and got our food and totally got teary eyed.  In the grand scheme of things, an exchange about tacos doesn't have any signficance.  But when I realize that 3 months ago, I never would have realized she got the order wrong, I never would have figured out that I could use both coupons and I never would have gone to sit at a table and listen for our number to be called.  I would have stayed there at the counter and waited for our order.  Then I would have been frustrated that the order was wrong and I would have either just taken the wrong order or started the whole process over agin.  In the grand scheme of things, I am grateful for a successful exchange over tacos.

2.5 Months Out

We went on vacation this last week and it was so nice to get away.  We travelled four hours south.  Normally, I hate being the passenger because I get bored.  Haven't been able to listen to music or books on tape for years.  I get sick if I read in the car.  And let's just say entertaining bored toddlers while driving does not exactly help the time pass!  But this trip was a little different.  The kids were still bored and whiny.  After entertaining them the best I could, I shut them off.  Hahahaha.  Don't you all wish you could do that?  Evan was jealous.  I hooked up my audio cable to the CI and listened to a book on tape. And I turned off the sound in the background.  It was divine.  I was understanding at least 80% of the book.  That definitely helped the time go by! 

We went to a national park and took the kids on a hike.  Though I still can't eavesdrop (I am serious, that's really what I want to acheive) it was fun to hear voices of people in front of and behind us.  At one point we were sitting down resting and some barely-dressed girls came down the trail.  My 3 year old says "those girls are naked!"  The girls were already several feet away and they started laughing their heads off.  My daughter was really embarassed.  But I heard them laughing the next several minutes.  That was fun.  It was also fun to hear the rush of the water no matter where we were in the park.

Noisy situations are still really really difficult.  Like the grocery stores.  Ugh!  Just can't separate all the noise and make sense of it.  And when people speak to me I get so lost.  I do have a "noise" program on my CI.  I use it at church and when grocery shopping or other loud places.  It does help a bit.  But I think it's just going to take a while for me to make sense of noise.  When several people are talking at once, all human leaves and all mechanics comes back.  Weird, huh?  However, when I'm talking to just one or two people, I am doing really well.  In the therapy office at work, I've only needed the amplification from my fm system for only about a third of the day.  It's been really nice to just sit and listen without extra devices.  I really think I'll get to the point at work where I won't need my assistive listening device hardly at all.

And, oh, last thing.  We have begun the process for implant #2.  This time, though, I am not doing anything but being tested and evaluated.  The implant team is doing all the work with insurance.  We suspect it will take about a year to get approval but the team is dedicated to making it happen.

Human

I just listened to today's passage on Telephone with Confidence (listening practice for the phone) and the story was about the princess and the frog.  It sounded almost fully human!  Hooray!

However, I can't pass my current level on vowels.....yet.  I've been working on the same step for over 3 weeks!!!  I took a break for a week and went back today.  That strategy worked for the consonants and I moved forward with those today.  But not so much luck with the vowels.  Right now, my choices are 9 words that sound alike and I have to choose which word I think I am hearing.  Think I may need to schedule another therapy session just to work on vowels. 

Good news is that I have made it to level 4 in every area but vowels :)

Happy Hearing Day

Great day today! I am hearing so well! From understanding directions to distinguishing the drill from the suction at the dentists office to hearing 75 % of a phone conversation with Evan. 75 percent!!! You can bet my heart is praising God tonight!

Children's Voices

I haven't taught joy school since just before my surgery in December.  If you remember from that time, it was not pleasant.  The lovely moms I work with have stepped in for me and pulled my share of the load while I've been recovering and rehabbing.  I went back today and we had a GREAT morning.  Of the four kids that were there, I heard the girls well and I heard one of the boys well.  But the other boy.........poor kid had to repeat himself at least 8 times every time he said something.  When I taught before, I would look to my daughter to help me interpret the other kids.  I don't want to do that again.  Ever.  Though I want her to have empathy and patience and all the good characteristics, I don't want her to feel responsible for me.  So this little boy was incredibly patient but I just couldn't understand most of what he said.  Hopefully that will get better!

I've noticed after my last map that I'm hearing my son better.  He also would have to repeat himself a lot or show me or give me a sign for me to understand him.  But now it seems that at least half the time I can understand him on the first try.  Granted, he speaks like a two year old, lots of gibberish.  So I don't expect to understand that.  But I sure love hearing his requests for water or snacks or play time or story time.

My daughter's voice is sounding really good to me. Still not completely human.  I don't know if voices will ever sound totally human again.  She speaks very clearly and very attentively.  For the most part we are having grand conversations :)

My kids are my motivation to keep plugging away at rehab.  I'm so very grateful that our communication is improving.  So grateful. 

The Sound Booth

Today was my 4th mapping.  It's been almost two months since activation.  Anne (the Audi) wanted to put me in the sound booth and I immediately felt the panic rising.  I hate being tested.  Those awful feelings of incompetency accompany sound booth testing.  But I agreed to it.  Sigh.

I do this back and forth thing in my head.  I am hearing better!  Am I hearing better, cuz I'm just not sure?  Yay, I"m making progress.  Oh man, I can't understand a thing.  Back and forth.  Back and forth!  And the sound booth would give us the scientific data.  Is the implant helping?

Well guess what.  It is!  Proven results!  Remember, these tests are without ANY lipreading.  With just my hearing aid, I understood 1% of recorded sentences spoken at conversation level.  With just the CI, I understood almost 50% of recorded sentences.  With both the CI and hearing aid together, I understood almost 60% of recorded sentences.  Anne also tested me with her voice.  I got about 65% right with her voice. 

Those results are GREAT!!  Happy day for me!  Now......if I could do sentence recognition that well in noise....that would be incredible.  Long ways to go.  But look how far I have come!!

And I think the new map is a good one.  While driving on the freeway, I could hear my daughter behind me scribbling with a pencil on paper.  :)

Backtracking....

You know how with some things in life you seem to take two steps forward and three steps back?  That's how I am feeling today!  I've backtracked with my rehab :(  Don't know if it's because I missed rehab yesterday (I am not able to get it in on Thursday which is my long work day) or if it's just the natural progression/digression of things.  But I am pretty much doing worse in all the categories (tones, vowels, consonants, environmental sounds and word recognition).  However, I am still doing okay in sentence recognition.  Patience.  Patience.  Patience.  Patience.  Patience.  Patience.  Maybe if I say it enough, mine will increase!  (Em, you are way nice, I have a long ways to go with patience!)

Misinformation and Success

Getting on soapbox.

I just read some difficult things on an online cochlear implant community.  There are just so many myths about implants.  Rather than feeding a fire and commenting on this community site, I am putting my two cents here.

A CI is a computer.  Inside your head.  With a processor outside your head.  It's designed to send sound directly into your cochlea, bypassing the damaged part of your ear.  Therefore, hearing through an implant is not the same thing as hearing naturally.  Of course the sounds are going to be awful compared to natural hearing.  It's a computer.  It's sounds are mechanical, high pitched and distorted.  Those sounds are hard to listen to and adjust to.  But.......amazingly, most people adjust.

However, some do not.  There are so many factors to consider.  Your support network.  Your degree and length of hearing loss.  Your own speech skills.  Your listening practice.  Your emotional stability.  Your physiology.  Your motivation.  Tinnitus.  Etc, etc.

If I only based my success on the first couple of weeks, I would have thrown my processor away.  A CI is not an instant cure.  It's not a cure.  It's a device designed to help you function when without it, you wouldn't function.  Some people feel it's a success when after 6 months they hear environmental sounds.  Some people feel it's a success when after 6 months, they can hear environmental sounds and speech.  Some can clearly understand speech on activation day.  Regardless of individual success levels, it's a hard process and it's an emotional process.  And it's a noisy, unnatural process!

But if you can hear more with a CI than without it, isn't it worth it??  And if the chances are that you will become more successful after going through rehabilitation, wouldn't you put your efforts into auditory therapy?  And if you are going to go under the knife to get an implant, wouldn't you actually do the research first to find out what an implant actually is?

For those who are struggling with how their CI sounds, they likely need support and validation.  They likely need suggestions on how to improve the listening experience.  Not judgment.  For those who get amazing results quickly, good for you!  But please, acknowledge the struggle that you also went through.  I learned something from a very good friend.  During the struggle, you suffer.  When the struggle has subsided and the success has taken reign, you are able to assimilate the suffering as "worth it."  You are able to put it in the proper place in your emotional experience.  And you become happy, grateful, thrilled for your CI.  And loyal to it.  However, in the depths of the suffering, it's very difficult to see the light.  You feel lonely.  You feel betrayed.  You feel darkness.  And you are negative.  That's a very normal, very human process.  It doesn't mean that the success stories around you are false or overly optimistic.  It means they are further ahead in their journey.  Let them be.

To those considering an implant, do your research.  Know what you are getting yourselves into.  And set up a support system to help you through it.

To the professionals who install and program implants, stop saying "everyone is different" and tell people what to expect!  Try empathy.  Really.  Nothing to be afraid of.  I'll even practice with you- "It's difficult to hear unnatural sounds all day, you are showing great courage."  Or "Feel free to vent about all the hard parts of this process because it's normal to have hard parts and then when you are done venting, we are going to try a new map."

To those who are in the depths of the suffering, know it's going to be okay.  Measure your success in small ways, not in "normal hearing."  Patience will be your daily trial.  Ask people to help you notice what you are doing well.

I love my CI.  But that love has not come without it's share of blood and sweat and tears.  If it never got better than what it is today, I will still be happy with it.  Because today, my CI combined with my hearing aid and my hardworking brain and my lipreading skills and my assistive listening devices, I am functioning well.  And that's more than what I was doing a couple of months ago.

Getting off soapbox now.   As one of my new hearing loss friends says..... blessings to you :)

Repeating

The first session we had, my therapist told me my speech was excellent compared to what I have not been hearing. She also said some people would notice my speech changing slightly as I adjusted to the implant.  I've been told by three people these past two weeks that my speech is becoming clearer.  I didn't realize the differences would be that recognizable.  Apparently, I couldn't hear consonants before getting my CI. And when you stop hearing consonants you stop saying them.  And now I hear them again and can say them again. Incredible!

I've been told by two different people this weekend that they are rarely repeating themselves anymore in conversations with me.  They both observed that I am understanding a lot more in the initial conversation and asking for less repeats.  Fantastic!

6 Weeks Post Activation

I know I keep saying this.  And I will probably keep saying this.  This process has been crazy.  So good.  So hard.  So wonderful.  So discouraging.  So humbling.  At the end of the night, I look forward to going silent.  But first thing next morning, I look forward to sound.

I'm starting to gain more confidence in some settings.  When I am at Walgreens, I can talk to the store clerks without too much difficulty.  I can now walk into work without my assistive listening device on and can communicate with the secretaries without it on.  I still use it for my sessions because I just want to make sure I am understanding everything that is being said.  Just 6 weeks ago, I wouldn't dare even walk into the building without my device on.  I noticed I am starting to initiate more conversations.  All progress.

With my direct connect audio cable, I can listen to audio books on Evan's ipod and probably understand about 60% without having to follow along in the book. 

Evan expressed concern that things would become so noisy for me that it would be harder to "hear" inspiration.  I'm happy to say that I very much still feel close to God.  I feel like I still very much rely on the Spirit to guide me through listening.  I hope I always do.  Though this process has been so up and down, I see God's hand throughout the entire journey.  I'm very grateful.  Very grateful to live in today's time.  Very grateful for a new start in the hearing world.  Very grateful for all the patience and love and support people have shown me.  And very grateful for all of the sound.

Miracles

I'm listening to music right now.  For real.  By my own choice.  I thought I would go through Evan's music to download familiar songs on his ipod for my listening practice.  So I started listening to see what was familiar.  Wanna know what song got me excited?  Tom Petty's "Free Fallin'".  Hahaha.  I know that song!  I decided to put in a Mariah Carey CD and set it to "When You Believe."  I looked up the lyrics to read while listening.  It made me cry!  It dawned on me that I am really going to be able to listen to music.  For real.  I've had an awakening.  Bring on the music!

Happy Friday

Though I am feeling a bit worn out from listening, I noted some signficant progress today during my rehab exercises.  A seal now sounds like a seal, instead of thunder.  A lawn mower now sounds like a lawn mower instead of a dentist's drill.  And happily, I got 16 melodies right out of 16.  Just because I wanted to compare, I took off my processor for part of my exercises and put in my hearing aid to listen to some of the music.  Oh my gosh.  This CI is doing way more for me than I have been giving it credit for lately.  With the hearing aid only, there was almost no melody at all.  Took the hearing aid off again and put on the CI, the melody came back almost fully.  My first day of rehab, I think I did not get any of the melodies right at all.  That's a lot of progress in 5 weeks.

In real life, I am also noticing improvements.  Today I went to a fantastic two hour training on attachment (for work).  For the first time in years, I attempted to hear the training without an assistive listening device. I succeeded :) :) :)  Well, most of the training.  A man spoke for about 20 minutes and I have no clue what he said.  But to understand an hour and forty minutes of it without the contego made me super happy.

There are, of course, areas that I am not doing well in at all.  Last night Evan took me to see 29 Steps at the Hale Center theatre.  He didn't realize it would be British accents.  I pretty much missed the whole play as the actors were all over the place so I could not read lips either.  But that's okay.  It was after a long day of listening at work and my brain can only do so much these days.  We are hopeful that we will be able to attend a play one day and I will be able to get more out of it.  A for effort!

And last but not least, I really feel like I am adjusting to the kids.  I do not feel as stressed listening to their noises around the clock.  So yeah, it's a happy friday!

What I Didn't Understand

It's been a month since I have been activated!  From that first roar to now, I feel like I have come lightyears ahead.  I have a long ways to go still but I love that I am progressing with hearing instead of digressing.  Tonight, while at the computer, I could hear my daughter in her bedroom coughing.  She rarely gets sick.  I can't even remember the last time she was sick.  As soon as I went in her room, I could hear her ragged breathing.  She's definitely sick.  Poor girl.  But I can't even begin to describe how grateful I am that I can hear her sickness.

I've been thinking.  A behavior I am known to do quite a lot.  I was considered a "well informed" patient by the implant team.  But there were lots of things I didn't quite understand.  I want to list some of them here.  For the record.  For the fam.  For whoever else is finding themselves on a similar journey.

What I Didn't Understand:

-- My hearing would become "worse" before it would become "better" in some things (like speech)

-- The mechanical/robotics of sounds would work my brain like it has never been worked before.  A lot of this brainwork just happens, you don't do anything but keep the implant on and your brain just works hard for you.  But there's a whole lot else you have to do to help it along.

-- Auditory training is for the purpose of turning machine sounds into human voice, not for amplifying sound

-- Though temporary, the competing signals of the implant and hearing aid would make me incapable of my normal accomodations

-- I would feel desperate to seek out other CI recipients to know if my experience was somewhat normal

-- High pitches would make me feel crazy (Thus, children's voices are hard to listen to day in and day out)

-- That some sounds would come immediately in their clear, pure, true form and feel so miraculous that I would cry my eyes out

-- That I would make a whole new world of friends

-- That my children would be freeing themselves of the burdens of a hearing impaired mother (I am only beginning to understand how much they were burdened).

-- That my anxiety levels would heighten and then dramatically drop

-- That I would discover my 3 year old speaks in paragraphs, has a clever imagination, knows big words and can reciprocate in conversations.  And that I would begin to understand there is a richness and depth to her voice that makes my soul feel like I am in the presence of someone who is wiser than me.

-- That I would realize just how many times a day my son calls for me from all over the house.  And that his words "that's funny" would fill my soul with joy.

-- That the first month would be wonderful and awful, rewarding and discouraging, peaceful and distracting.


Here's my disclaimer.  Everyone is different.  I have heard of some understanding speech clearly from the first day of activation.  But that is certainly not the most common.  I have heard of some not understanding speech at all 6 months after activation.  But that is certainly not the most common.  There are so many variables.  Pattern of hearing loss, cause of hearing loss, surgeon's skill, device chosen, mappings, rehab, etc.  But this is my experience and I believe it's similar to many others.

Voices are getting easier.  The kids voices are getting easier.  It's literally been a "line upon line" experience with each sound building on the block before it.  I can't just "skip ahead."  Sure, sometimes it feels tedious.  But this modern miracle has changed my life.  It was most definitely the right decision.  Month 2 will be even better :)

p.s. The vibrating in my head from the high frequencies (result of 3rd map) is already becoming less noticeable!  That was fast!

Back to Routine

Life has resumed.  Now that I am functioning again, I'm back to being busy.  Really busy.  I worry about getting my listening practice in now.  But I can't afford not to get it in.  It's tricky to keep it all in balance. 

I am now fully back at work and am super happy with how well I am doing in my sessions.  I went to a staff meeting this week and was pleasantly surprised at how much more I got out of it the first hour.  The second hour......that's a different story.  My head still hurts from it.  Hahaha.

Noisy environments are really hard on me.  I can only hear this obnoxious background noise.  At Walmart yesterday, a couple was talking to me about avocados.  I totally faked my way through that conversation.  Still have no idea what they were saying.  Hope they didn't ask me any questions! 

I love my 3rd Map!!

The 11th attempt

Just about every day, I work on the Sound and Way Beyond software for rehab.  Some of the tests are super easy.  Some of them are super, super hard.  One of the hardest for me right now is vowel recognition.  There are 5 levels.  I am currently on the 2nd level.  There are 16 steps in level 2.  I've been working step 11 for the past two weeks, trying to pass the ridiculous thing.  I've failed it 10 times.  Today, on attempt 11, I passed FINALLY!!  You know what that means?!  It's time to bust out with the Moose Tracks stored safely in the freezer awaiting a celebration day.  That day is here!

CRAZY

This experience is CrAzY!  Honestly, I thought I was prepared.  But I just didn't get it.  I didn't get that I would be able to hear awesomely well right from the beginning but have no clarity in voice.  So when I talk to the "professionals" about how hard voices are, they basically all say the same thing.  "Everyone's experience is very different and it's a very wide spectrum."  Well, I can't speak for anyone else, but wherever I am on the spectrum (they call me "normal"), let me just say it's cRaZy!  I need lots of validation these days!  I have so much respect for others who have gone before me who have truly been able to train their brains in this CrAzY.

I had my 3rd map today.  I'm much happier with the results of this map than the 2nd one.  I feel like I backtracked with the 2nd map but then slowly started doing better than the 1st map.  Today, I do not feel like I have backtracked.  The audi's did a more refined map so it was a bit different than the last two.  At first, I had to count beeps like before.  But when they turned it on after than, they sounded like they were talking through a tunnel.  So they changed strategies.  There are 22 electrodes in my implant.  22 electrodes stimulating my cochlea.  I'm still in awe over this technology.  Anyways, for each of the electrodes they did a balance test.  So I listened to three tones and had to give them feedback on the loudness levels of each of the tones.  The goal was to make all 3 tones the same volume.  So I would respond with something like "the first and third tone had the same volume but the second was way softer."  They would adjust and do it again.  We did this again and again and again.  Until all the tones sounded similar in volume.  Then they turned it on again.  Their voices sounded hollow.  They did a quick little switch somewhere and turned it on once again.  Ahhh.  Better.  Not fully human.  But better.  The weird thing though is that some of the high pitches now cause my brain to vibrate.  Apparently these high pitches my brain has not heard (or at least hasn't heard for most of my life) and so my brain doesn't know what to do with them.  Instead of recognizing it as sound, my brain is categorizing it as throbbing.  Unfortunately, the pitches that cause throbbing are the super high frequency ones.  Well guess what frequency I am surrounded in all day.  Yep, my kiddos.  So I got home from my mapping and my brain vibrated for 3 straight hours until their bed time.  I think I looked at the clock every 3 seconds, willing it to turn faster so I could put them in bed!

Now that the boring stuff has been discussed, I'll talk about the GOOD stuff.  While in the store on the way home, I could tell that two people were having a discussion.  They were not anywhere near me.  I had to search to find them.  They were behind me and several feet away.  I couldn't understand what they were saying but I could identify who had which voice and could also identify when the other person started talking.  Whoo hoo!  I can not wait until I can eavesdrop!!!!!!!!!

Also, tonight Evan was wringing his hands to get excess water off of them.  I heard that excess water splat in the sink!!!  CrAzY!  While tucking in my daughter for the night, I heard this strange noise and couldn't figure out where it was coming from.  It was from her stuffed animal dog.  I knew it moved but I did not know it made noise when it moved. 

Oh, one more thing!  My other programs have been installed!  Finally!  Now I can control noise in the background (maybe?) and can practice listening to music (hopefully?).  It's a happy (though head-achy) day!

A Human Voice!

Breakthrough tonight!!!  I am so excited!  I heard human.  My 11 year old nephew came over and he is a pretty quiet kid.  I really have not heard him well in years.  Tonight, when he spoke, he sounded human!!!!  Still some distortion and mechanical sounds to his voice but the majority of his voice sounded like a human's voice.  I am so excited.  Someone I can almost understand!  I made him talk while I was looking down so I could not lip read.  I understood each sentence on the second try.  Whoo hoo!!  The volume of his voice was most excellent.  :) :) :)  Of course, once my sister and Evan started talking, the robotics all came back.  But when they stopped talking and my nephew started, again, it sounded human.  I love human!

Today I Heard.....

Somebody start their car from across the parking lot!  Is that possible?  Can people with "normal" hearing hear others start their cars?

p.s. Em, I'll get back to you on the chocolate :)

Evan's Vantage Point of Activation

Kristel has been wanting me to give my vantage point of her CI Activation Day and am finally getting around to it! The entire process has been really interesting. Leading up to the actual surgery I was a wreck and nervous where Kristel was as calm as a nice summer's day. But leading up to and the day of activation Kristel was a wreck and nervous where I was the calm one.

Kristel was so worried that the device wouldn't work and she wouldn't be able to hear anything. I kept a positive attitude and kept reassuring her and telling her things like we didn't come all this way and go through all of the stuff we did for it not to work. It will work, and it will be great! I'd like to think that my positive attitude is what kept her going.

I had really no idea what to expect when they activated the device. It was crazy that it was all done through a laptop connection to the implant and were able to program it and make adjustments...seriously, technology is amazing. So a lot of the technical stuff about it I will bypass because I really don't know where to start.

At first, I guess they turned on individual electrodes at a time and Kristel was supposed to respond when she heard beeps or tones. Going into it, all Kristel wanted was to hear these beeps, which would make it successful. When the audiologist first started sending the beeps through and there was no response from Kristel, I could see in her eyes and by her demeanor that her anxiety level was increasing along with her stress because she knew that there were beeps, but she couldn't hear them. I imagined her screaming inside, "Noooooooooooo!"

Apparently, it was completely normal not to hear anything at first, but when she did hear the first beeps her demeanor completely changed, her face lit up, a smile broadened across her face, and exclaimed joyfully, "I heard it!" From there, the rest of the process was as smooth as a hot knife cutting through butter. (I'm just full of metaphors and similes today!)

Most of my "occupation" was capturing it all on film, which you can see some clips at the end of this post, but it was really exciting to see Kristel start to hear more and more and make out not just beeps, but other sounds, tones, and speech! She was super excited about the results and so happy that it worked. Two of my favorite parts of the activation is where she heard a question from the audiologist - "Do you have children?" Kristel repeated the question and responded, "I do!" See video below:

My other favorite time was when she heard my voice for the first time and gave this big happy sigh, "Ahhhhh...." Later, Kristel said that it sounded like home. That made me really happy. I will have to find that video and put it here too. Check for an update later with more videos.

Overall, it was a great experience and Kristel was super excited and happy about it. We celebrated by going to Olive Garden!

Celebrating

I taught a lesson on Sunday about celebrating our small steps of progress.  So I can't just leave off with my last post about discouragement!

Tonight, I had the greatest time cooking.  Remember how I was excited about how great ground beef sounds sizzling?  Well tonight, it stood out to me above the background noise, I didn't have to do any brain work for it to happen!  And I loved the sound of my knife slicing through the onion.  Slice, chop, slice, chop.  The chop is when the knife hit the cutting board.

There are so many things I am hearing SO well.  I just really have to make sure I stay in the moment and appreciate how far I have come, not worry about far I still need to go.  Hooray for celebrating.  Now I am going to go eat chocolate :)

Lipreading

Today's been a little discouraging.  It's really difficult to put this whole experience into words.  I had to take my son to the doctor and I was not able to communicate very well.  His doctor is fantastic and super accomodating so I normally hear him very well (with both of my hearing aids before my CI).  Now, I don't ever take my CI off during the day and voices are so mechanical with it.  When I go into a situation where I need to hear more (like my son's doctor), I wear my hearing aid also.  But it seems too complicated to understand speech.  It's like my brain can't make sense of the competing signals coming in from both sides, as they are so different.  So I focus super hard on lipreading.  But it seems I am ineffective at lipreading right now.  I think I figured out today why.  I think it's a 3rd competing signal going into my brain and my brain just can't keep up with it all.  I contacted my audiologist about it.  She said that this is all "normal" and that research suggests my brain will be able to eventually adjust to all the competing signals.  All those people out there who think this is a quick fix couldn't be further from the truth!  One day at a time!

Adjusting

I started making progress again on Friday night.  Hooray!!  Evan was helping me with some listening exercises and he was happy with how much better I did with them compared to Wednesday!  I was able to advance some more in therapy yesterday also.  My therapist covers her mouth and says words, phrases and sentences.  I have to say out loud what I think I heard.  Often it makes absolutely no sense but it leads me to eventually getting it right.  The hardest letter for me right now is a.  Through an implant, a doesn't sound like a.  It sounds like ehhhhhhhhhh. 

This weekend has been pretty good, though of course Church was hard.  I just LOVE the women in my ward (local congregation).  They are so loving and so patient.  They have done so much for me these past couple of months.  One, in particular, led the efforts to raise funds for flowers and gifts for me during my recovery.  Another helped with the kids on countless occassions.  Many have prayed for me and have become invested in my journey.  How grateful I am for each of them!  I am so amazed that this journey has led me to strengthen relationships.  I am excited to connect more with people instead of shying away from all things social.

Oh, and a great moment!  When I left the therapist's office yesterday and got in my car, it was raining.  I just sat in my car and started listening to the rain.  Rain has always just been noise these last few years, nothing clear about it.  But as I listened, I could hear individual drops of rain.  Lots of them.  It was like each drop made an individual sound and together it sounded like multi-drops.  So fun!!

Back to Work

Most people who get a CI are back to work within a week or two of surgery.  Most people have jobs where they can still do some work without hearing.  Not I.  Why I chose a field that relies SOLELY on hearing, I have no idea.  But I did.  I had clients scheduled last week but I cancelled them.  I only work two days a week so it's not like I've missed THAT much.  But I was nervous to start back today after my new map yesterday.  I only saw two clients and gave myself 4 hours between them to adjust to the sounds of the office.  My session with my morning client went well, though it took about 150% of energy and employing ALL my accomodations.  Talking with other staff members in the morning went well.  But everything changed in the afternoon.  There were more people, there was more noise and maybe my brain was already tired?  My afternoon session was much harder.  How do I give more than 150% of my energy and accomodations??  I can't.  I pray for mercy.  It was granted.  I felt guidance from above and I made it through and hopefully my client felt it was a productive session.

I just have to give a shout-out to my co-workers.  I was just overcome with emotion today at how absolutely amazing and supportive and loving they all are.  Truly.  I am surrounded by the best of the best.