Gala!

Advanced Bionics sponsored a table at the fundraising gala for the Auditory Verbal Center of Atlanta. My husband and I and our best friends were invited to attend. This was a black tie affair with silent auction, dinner, and dancing. In the past, I never would have attended. Sure, it's always fun to dress up...but trying to feel a part of an event? That's too hard when you have a hearing loss. Trying to understand speech in a noisy environment is frustrating. In the past, I would have felt isolated and frustrated. That was not the case on Saturday night.

My friend, Amy.

When we arrived, the dance band was playing. I set my Naida on clear voice medium so I could hear the music softly but hear my friend completely. We walked around enjoying the auction and the hors d'oeurves.

Susan Frisbee, AB clinical specialist

One of  the other guests that night was Susan Frisbee, clinical specialist for Advanced Bionics. She introduced me to one of the top audiologists in Atlanta, Jolie Fainburg. Jolie is great--gregarious and very chatty--and she talks fast! At one point, she apologized for talking so fast because she thought I must be missing a bunch of what she was saying. Not so...I got it all!

Dr. Bhansali and his favorite patient!

At dinner, the table was rounded out by my audiologist Katie, and my implant surgeon, Dr. Bhansali. I'm not sure why, but I'm still a little intimidated by principals and doctors. Nonetheless, we chatted pleasantly through dinner. At one point, Dr. Bhansali asked me if I could understand him. I was a little perplexed. Of course I could (I'd switched to UltraZoom for dinner conversation). When I told him I heard him with no problem, others at the table chimed in that they could not hear the person across the table...but I could. Even the doctor and two audiologists at the table were amazed at the performance of the Naida UltraZoom program.

Me and the hubs!

Sure, there were times I couldn't hear at the gala...like when the speakers mumbled into the microphones (no one at the table could hear them, either). Going to a social event, meeting new people, and enjoying myself--well, that's a big deal for me.
It may sound corny and trite, but I have to say it: thanks Advanced Bionics. Piece by piece, little by little, I'm getting my life back--and I am truly grateful.

My lost tribe

A few weeks ago I was invited to become a BEA (Bionic EarAssociation) mentor. The BEA is a group of cochlear implant recipients and professionals that connect to promote the benefits of implants and Advanced Bionics technologies.  After receiving the gift of hearing in July, I’ve wanted to find a way to “give back.” Helping others on their CI journey seemed a perfect way.

Cochlear Implant Mecca

I flew out to California (the home of Advanced Bionics) with an online friend who helped me in my own CI journey. We were so excited to become “real-life” friends and spend time with others we’d met online. 

Megan Pender and Me!

We were exhausted by the time we finally arrived in California…but there was no way we could sleep! Fellow CI users were gathering in the hotel lobby! The fun was just beginning!

Most of us on the CI journey do not have local friends with implants. Sure, we have people who support us and care for us…but we don’t have a local friend who has an implant and understands what we have gone through and are continuing to go through.  Now, here we were with others who have walked in our moccasins. I found my lost tribe!

Some of my tribe mates.

While we all travelled a different route to get to the point of needing a cochlear implant, we all had the same goal: hearing better. On Friday, we shared our stories with each other. Some had been hearing impaired their entire life, while others were late deafened. Some were parents of profoundly deaf children. The common thread between us was that through the technology of Advanced Bionics, we got our lives back. To me, the most poignant stories were the parents. They were so afraid of the future for their children. Would they learn? Would they speak? And now, they have hope—hope that the dreams they dreamed for them will come true. Does it get any better than that?

Part of the mentor training included product knowledge. Knowing how our CIs work and the technology that goes into them helps us help others make informed decisions. I just scratched my head and wondered how anyone could make a choice other than AB. The technology is just that much better. We were even given a tour of the facility so we could see the implants and processors being made. Imagine the “Mike TV” part of Willy Wonka…white sterile suits and high security. Cool stuff for techies!

Mentors with the AB president

Saturday morning started with a chat with Hansjuerg Emch, president of AB. He wanted to know how we liked our processors. He asked us for specific examples of how the new technology was improving our lives. I had several examples and was happy to share! Chatting with the president I realized what makes AB different from most companies (not most CI companies; most companies in general): AB’s foundation is built on having the best technology and the best customer support. When they say they care, I truly believe they do. Throughout the weekend, the mentors were asked about what works and what doesn’t work: items from websites, online forums, iPad apps, processors…what do we like and what do we want to see improved. Those who can make improvements took notes and I expect to see some changes in the future, making some of the sites more user friendly.

Saturday we looked at in depth our roles as mentors. How do we help those who reach out to us? In life, it’s all about helping each other, isn’t it? Experienced moms help new moms, experienced teachers help new teacher, and so on and so on.

 So it is with cochlear implants. Hearing loss changes us. Many of us are still reeling from the sudden changes in our cozy little world. Others have had years to acclimate. No matter where anyone is on this journey, it’s far easier to travel it with a friend. That’s what mentorship is all about. We find our “tribe mates” and then we journey with them. Thank you, AB, for helping me find my tribe!

Southern region mentors with Edie Gibson.

Five Minute Friday! True

Truth: I didn't write this in 5 minutes...I wrote it over several hours. It's a guest blog on a cochlear implant forum. However, I copy/pasted it in less than 10 seconds. Hope that counts! This is my true "back story."

Life: it’s so full of irony!

As a young woman in college, I majored in Deaf Education. I wanted to teach sign language to sweet little deaf children. After graduating in 1984, I taught one year (high school, definitely not sweet) and then stayed home to raise my own children. 

Fast forward to 2009 and I’m nearly deaf myself!  I was teaching 8^th grade language arts (regular education and also not sweet) and having a hard time understanding the students. They were tired of repeating themselves, but I was convinced I had a classroom full of mumblers. A visit to the ENT proved otherwise: I had a mild to moderate hearing loss in one ear and mild to profound sloping loss in the other. My mother has worn hearing aids since her 30s, and I assumed hearing loss was another trait I inherited from her. Most of the traits have been good ones; this one was bad news! 

Most of us trust our doctors or other health care providers. I was the same. When the audiologist recommended a particular hearing aid, I bought it. She said amplifying the ear with the sloping loss wasn’t necessary. She had the audiology degree, not me, so I deferred to her judgment.

Because of my background in Deaf Ed, I knew enough to know hearing aids are not like glasses. I would not be fixed; however, I was very disappointed with how I understood with the aid. Sure it helped, but not at the level I had hoped for. Teaching was becoming more difficult.

I continued to go back to the audiologist periodically for adjustments and tests. Each time, I was hearing a bit worse. I took comfort in the fact that “at least I’m not as deaf as mom.” Within two years, my worse ear dropped off the chart in frequencies over 500 Hz. 

At this point, teaching was getting difficult. Some 8^th graders are very sweet, but many think it’s hilarious when the teacher cannot hear without 2-3 repeats. Some of them were really nasty. The job I once loved was becoming the most stressful part of my life.

In March of 2013, I woke up one day feeling like I was talking into a barrel. I figured I must be sick or something—I felt like all sounds were muffled. I knew I just had to have fluid in my ears because I couldn’t even hear the beep of my hearing aid changing programs. A quick check at the doctor was disheartening; my ears were clear. Overnight, my hearing had dropped 20-30 dB across the board.

The doctor looked at me and said that it was time to see a neurotologist and discuss a cochlear implant. I told him that cochlear implants were for “really deaf people.” He smiled sadly at me and said, “You are a really deaf people.” 

So, I went to see one of the leading CI doctors in Atlanta. He looked at my audiogram and said that if I tested like the previous one indicated, I would be a CI candidate. Then a key learning occurred: he looked at my hearing aid and said, “Good grief, what are you wearing?? This is a piece of crap!” Wow…it was a very expensive piece of crap. How are we, the general public to know better? I trusted my ENT and his audiologist, but they are not experienced with late deafened adults. Most of their patients are hard of hearing elderly. How did I know that I needed something bigger, better, stronger, etc? I tell those I meet now that they must do more hearing aid research. It’s important to see not just your ENT’s audiologist, but an independent one. See what is out there. Try them out for a bit. I figured when my doctor told me all of this he was gearing up to sell me a really expensive hearing aid. I braced myself.

The doctor came back after the battery of audiologist’s test. He said there was no point in buying more hearing aids—my speech discrimination was so bad (4% and 8%) that I needed a CI.

I decided to do the surgery after school was out. In the meantime, I tried to finish the year strong. I used my spare time to work on learning sign language again. I was so glad that if anyone in my family had to go deaf it was me, since I already had the background to help me communicate.

My surgery was July 3. The procedure went well, and I was home later that day. The longest period for anyone who receives an implant is the time between surgery and activation. I chose to implant my better ear. Many people think this is a bad idea. They worry that something could go wrong and then they have nothing. My doctor thought I’d get the best results with my good ear, since the bad ear was so, well, bad. It had been several years since I’d heard anything, so I followed his advice. The interim was very, very quiet.

I requested the Advanced Bionics audiologist to attend my activation. Not only did I have the clinical specialist there, I had two AB support staff attend because they were in town and loved to see activations. I tried to keep my expectations low and my hopes high. But frankly, I just had a feeling it would go well.  I’d read many activation stories about late-deafened adults and knew I had a chance for a “rock star” activation.

The room was a little crowded with the three AB reps, my audiologist, my husband, and my son…but we were all so excited. I started off listening to tones that sounded like drumming, and then I heard some beeps. It was time to switch to voices. My heart pounded in anticipation…I just knew I was going to hear from the get go! But I didn’t. I heard what reminded me of a super low-budget  60’s sci fi flic. I took a deep breath and tried not to let my disappointment show. I knew hearing with a CI was a process, and it looked like it would be a longer process.  This was apparently going to take a lot of work and rehab. The two audiologists continued to program and change settings. I listened to beeps and sounds. But what was that?? That sounded like a word! There it was again! It was a word! It was loud and high pitched (helium infused??), but it was speech!! OMG! I heard, I told them. I heard my husband. I heard my son. I told the audiologist I didn’t need her to sign because I could hear her! I could hear everyone in the room! They told me I was a rock star—and then they passed out the tissues. I clearly understood every spoken word.  Yes, it sounded like everyone was breathing helium…but I could live with that. It was speech—and I heard it. I could hear.

This would be a happy story if it just ended here, but it didn’t. The next day was my son’s district Eagle Board, where they would decide if he had met the requirements to be awarded scouting’s highest honor. My husband and I sat in a room while our son met with the board for about thirty minutes. Then, we were ushered back to join him. Something had happened that morning. The helium was gone. Voices were not quite normal, but they were pretty close to it. I walked into the room and stood with my husband and son. One of the men on the board addressed us and said “Congratulations! We are proud to award Scott Joiner the rank of Eagle Scout.” And I heard every word.

The Latest and Greatest

Friday I activated my new processor, the Advanced Bionics Naida. Well, the audiologist activated it. Actually, AB sent their clinical specialist to assist my audiologist since this product is new to the market.

The Naida shipped last week to my house. I've been looking at it and yearning to wear it for a week before I was actually scheduled to have it programmed. I've dreamed about amazing hearing. I've heard only positive comments about the "new, sleek design." I had very high expectations.

I am new to the cochlear implant community. I've only been activated for 7 weeks. In that time, I've been very fortunate. I have amazing hearing at this point. I have absolutely loved the processor I received at initial activation, the AB Neptune. The Neptune clips to clothing, hair, undergarments, etc..and there's a cable that goes to the magnet implanted in my head. I can't feel it when I wear it.

The activation began with switching the operating system (like upgrading an iPhone), which uses far less battery. This system is called Optima. It made sound a little sharper and crisper right off the bat. However, I'd been bothered by reverberating sounds. Here's the tricky part: people who are hearing something in their head have a hard time communicating what that sound is to someone who can't hear it in theirs. The sound I hear is kind of like talking into a cup or barrel. It doesn't interfere with comprehension, but it's annoying. So, we tried to figure out where it was coming from and eradicate it. It seemed as though nothing really made a lot of difference. "Is this better? What about this? This?" Ugh...was like the eye doctor, "A or B? B or A??" I wanted to scream, "Just fix it!!" But it's much more complicated than that. I had to remind myself (often) that hearing with a cochlear implant is going to sound different than "normal" hearing...and maybe the little buzz on the words was just part of it. Ever onward.

The Naida holds 5 programs. I had to decide what to add. My every day program is called "clear voice medium." It helps filter out background noise. As a teacher, I live in a world of background noise, so this program is great for me. I added a program for music, one for extra noisy background, and one that zooms in on the speaker (called UltraZoom). I have also have a program that works when the processor ear piece is disengaged.

So, I get all programmed and am ready to be in love with this new technology. Except I'm not. I'm stressed from the buzzing. I'm stressed from too much programming. I'm stressed from the new feel. Many people I know with CIs are not going from the Neptune to the Naida; they are moving from the Harmony--a large behind the ear processor. To them, the Naida is tiny and oh-so-much lighter. To me, it's weight on my ear. It's far larger than the hearing aid I wore prior to surgery.

Driving home, I am not a happy camper. I am not sure about the programs. I struggled to set up the blue tooth device for good sound quality. I'm sitting on 285 in Atlanta at 5 PM rush hour AND I'm hungry. So like any passenger who wants to disengage from the snarl of traffic, I check my email. Oh great..someone who I asked a simple question to says, "call me." I'm deaf: I hate phones. Oh wait...I have a CI now...I can use a phone (I keep forgetting). So I call her, using the Naida, which has a microphone by my ear and I hold the phone like a normal person and have a normal phone conversation with someone who didn't know I was deaf (and didn't know after the conversation, either). Hmmm.

But I'm still crabby. I get home and eat (at least that is solved easily). It's only 7 PM, but I collapse on the couch. I take off the processor. I am on noise overload. Leave.Me.Alone. I am soon asleep. Tomorrow is another day...I will start fresh with a better attitude.

I put the Naida on in the morning and go about my Saturday. I have a nice chat with my dad on the phone (without looking at the captions). I talk to my husband. I hear some obnoxious noise...no idea what it is...go outside..it's a crazy bird squawking in my tree. Wow. It's raining...I stand outside and enjoy the sound of that. This is good stuff!

I wrote a book last year. I love my co-author, but haven't seen her in months. We arranged to meet at Mimi's for lunch. She arrives and it's mobbed. She suggests we go someplace less crowded so we can chat...she knows how I struggle (and face it, it's exhausting for hearing people to repeat themselves 3X). I told her I had this new processor and we had to try it out in noise, so we should stay. Then I switched to UltraZoom. Perhaps I should call it "super, amazing UltraZoom."

Debbie and I at West Point for our book signing.

My friend and I sat and had a long chat over our leisurely lunch. I looked her in the eye the whole time (not the mouth as before to facilitate lip reading). She commented that she hadn't had to repeat herself once. How do you put into words the joy of casual conversation between two friends? This is what I've missed with my hearing loss...and this is what I've gotten back. What a gift!

So what is the point of the ridiculously long blog? (And thank you if you're still reading at this point). There are several:

• Even the most ardent CI fan is going to have an adjustment period to any programming.
• If you're going from the Neptune to the Naida, it's going to take some getting used to having anything on your ear.
• Many people who are considering CI are watching and listening to those of us who have them. We need to be "real," and share both our joys and struggles. 
• It's not just a bunch of hype: the Naida is an amazing processor.
• I don't want to start a brand war, but AB rocks!

Thanks for reading about my hearing journey! I'd love to hear from you--and am happy to supply any details, just in case this wasn't detailed enough for you! Please leave me a comment below...bloggers love comments!

Five Minute Friday: She

Some weeks I participate in a group blog endeavor called Five Minute Fridays. We blog and share on a common site. The gal who runs the group pics the topic. This week it's "she." At first, I shook my head thinking it a strange topic...then I chuckled. "She" is a big part of who I am.

For many years, I longed to have a doctor announce, "She's here!" or "She's a girl!" But it never happened for me. There was a time this made me very sad.

I recall the trip home from the ultrasound for my 3rd child. My neighbors actually stood outside chatting, knowing I'd arrive shortly. I pushed the garage door button, pulled in, and shut it. I was in no mood for any cheery platitudes. It was not a she; it was he #3. Later that day, I received flowers from my husband and my parents. This was ridiculous; I was carrying a healthy baby...no need for flowers...there was nothing to mourn (except for all my dreams of tea parties and matching mother-daughter dresses).

Fast forward 18 years (oops, I blinked!). Number three is the joy of my heart. What a blessing HE is. I am so thankful that God blesses us with His best--not our idea of the perfect scenario. I am so, so blessed, lucky, thankful HAPPY to have three wonderful HEs in my life!

In all my forums, I am Mom3Boys! What a gift!

Mercy--Five Minute Friday

My brother used to introduce me to new games...like "mercy." In mercy, you lock fingers together and basically inflict such pain, driving the other person to his/her (always her) knees...until she shouts, "Mercy!!" Ha! Glad we grew out of that. Thanks, Geoff!

Now that I am older, I have a different appreciation for mercy. Webster says mercy is " kind or forgiving treatment of someone who could be treated harshly." We often bring harsh consequences on ourselves...sometimes we really deserve them, too. BUT (how I love that word! How God uses "BUT" as a turning point to change EVERYTHING!!!) an overarching theme of scripture is the mercy of God: "O give thanks unto the Lord: for He is good, for His mercy endureth forever" (Ps. 136:1).

What are examples of mercy? Mercies can be kindnesses, compassion, fortunate circumstances, and blessings. There's an old hymn that says:

"Count your blessings, name them one by one,
Count your blessings, see what God hath done!
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done."

So, here are some of mine:

1. Amazing husband and kids!
2. Kids all live pretty close.
3. Parents in great health and live close by.
4. School year started well and students are so nice!
5. Good friends.
6. Hearing restored with cochlear implant!!!!!!!
7. Good health.
8. Best country in the world!!

But some people are going through tougher times...and it's hard to figure out the mercy and blessings in that. To them, I offer a later stanza in this song:

So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.

May you see God's mercy in a fresh way today!

Five Minute Friday: Last

This school year has started out with a series of lasts...

My son's last first day of school.

Last first day of school!

My last PTA curriculum night.

The last 18 years have totally flown by. I wish the little boy days had lasted longer. Now my sons are all nearly grown. I can't believe it's time to be searching for colleges for the last one.

But they cannot; it's not the natural order of things. Our love and relationships last, but childhood has a stopping point--for us, it's time to move on. And, really, that's ok...he's ready (I am not). He knows this. He knows I do not want him going far away for college. He also knows my love for him has me putting aside what I want and looking toward what he wants. He knows I'll help navigate the college journey. I am there for him...through all of his lasts (and my lasts).

My sons bring me such joy. I am a blessed mom.

Childhood doesn't last though. So, I cling now to something that does. The word of God: The grass withers and the flowers fall, but the word of our God lasts forever.”

So, as I bundle up my child for all the lasts he faces this year, I cling to a promise of God: "Train up a child in  the way they should go, and even when they are old they will not turn from it."


If you are facing some "lasts," with your sons (and daughters), I hope you can share in the joys they are feeling. It's sad for us moms...we have been their suns and they, our planets...but this is the natural order of things...and the joy and love we've created in our little universe will last.