Near death experiences...and staying water proof

Happy Fourth of July!! The family decided we'd travel to the Nantahala River for a little white water rafting. Additional preparation is necessary when you are deaf.
I wanted to be sure my Neptune processor would stay on, so I ordered a snug headband from BolderBands. I put the headband on over the cable to my AquaMic.(headpiece that attaches via a magnet--brown thing in the picture).

In the picture, I have the processor clipped to the pony tail holder. The hubs suggested that might be sturdier/safer in case I fell out of the boat. (rolled eyes...I never fall out of the boat...) It's all nicely secured by my AB hat.

So, our group got ready to hit the river. It was a beautiful day in Bryson City...and we were all set to raft with Mom at Paddle Inn. We had a crowd: our three sons, two girlfriends, and the parents of one of the girls. Three in the group had never rafted before. The boys have gone quite a bit from scouting, and I've been a few times. Usually Steve and I go in a two person raft (called a double duck), but we went in the "all adult boat" today...a four person raft.
Paddle Inn is a great outfitter. Before they take you to the put in, the owner asks for God's protection over your group. It was a good thing she did that today.   

The people who take the time to read what I write are pretty astute; so at this point, you're probably already seeing the writing on the wall...so I'll cut to the chase. About 3/4 of the way down the river, we somehow didn't steer properly around a rock. We hit it sideways. First the girlfriend's dad fell out...(I thought, "oh no! that's terrible!!), then her mom ("oh, that water is going to be cold!"), then Steve and me ("We're all going in????"). The water is about 47 degrees. It's a dam controlled river and it's really cold. Really cold. I was able to hang onto the boat handle on the side with one hand and my paddle with the other. I remembered to keep my feet up and facing down stream. I was bounced around like...well, like a gal rafting in white water without a raft. I kept looking for a break in the waves (much of this river is pretty calm...not this area!). My aqua mic  was bouncing around like crazy...hear/not hear/hear/not hear. At one point, the only voice I could hear was my own pitiful one in my head saying "help me...someone help me!" Finally, the rapids calmed, and I was able to get to the shore and stand. I found some terra firma to plant my frigus tibus (cold butt) on. Hubs went to check on gf father, who was on his own piece of shore...The gf's mom was plucked from the river by my eldest son. I sat there on my little piece of real estate...cold, alone, and quite happy to be alive. My hat had flipped back, but didn't fall off because of the processor clipped to the pony tail holder (thanks, hubs). I reattached the UHP, put my headband and hat back on, and waited for the group to reassemble on the raft (yay for sound again! scary as heck being soundless during the bumpy ride!) Before long, we were on our way...a little worse for the wear--a few bruises, a little blood, and one less pair of eye glasses.   We got out at the place you can look at the last rapid (read: class 5 scary, I mean bad). With resignation, we got back in the raft and said, "Let's do this!!"
 So, we did:

              

You matter.

One thing about this CI: I am not left out any more. I pretty much hear all the conversations. Sure, I miss a few things here and there, but for the most part, I'm back in the game. YAY! I truly feel like I have been given my life back. Everyone is not as lucky as me.

Hearing loss is so lonely! It's isolating. Sure, your family will probably make sure you understand what is going on...but even those who really love you grow weary of constantly repeating themselves and telling you what someone else said.

Here is a comment from another deaf person I know online: When we get told "it doesn't matter" often enough, we interpret it as "you don't matter," and this is one reason our self esteem is battered. What is sad is that most of the time it really doesn't matter, but we want, of course, the choice of deciding that for ourselves. So a second emotional battering occurs because we are not in control of our own decisions.

Do you know someone who struggles with hearing? What can you do to make communication easier? Here are some simple ideas:

• Be sure the person with the hearing loss is paying attention before you start speaking.
• Look at the person you are talking to. 
• If you are in a group, talk one at a time.
• Take your hand away from your mouth.
• Repeat when asked, but consider rephrasing what you said. 
• Say it again if necessary.
• Never, ever say "it doesn't matter." It does; it really does.

Most of us would NEVER say "you don't matter" with our words. Don't say it with your actions, either.

How's the new ear?

As an elf, I could hear the bells on my costume!

In an attempt to be "real," (as opposed to Pollyanna) I submit the following update on my hearing journey:

• I have been very happy w/ how I was hearing w/ the implant in my better ear. Since the other ear was pretty much dead, I decided to implant it as well--nothing to lose.
• I've struggled trying to get rid of an echo/reverberation with several more mappings than normal. It's still there. UGH!!!
• Surgery was Dec. 4 and I was activated 2 weeks later. The second activation was not "rockstar" like the first--which I'd anticipated, since it was so dead. However, I do hear speech...it's just "warbled."
• After surgery, my map on my first ear was very screwed up...had a very hard time hearing/understanding. It could be from the procedure or it could just be it's screwed up.
• At activation, the audi attempted to adjust the other ear. It's not there yet, but it's better. 
• A week into the new ear and I keep jumping every time I realize that I'm hearing out of that side!
• I am very anxious to be "there." I am not where I want to be and realize I am greedy and selfish and want to have good hearing now. When I read about someone doing well, I am happy for them and also jealous that I am not there. I confess this up front--sorry if you are disappointed in my admission.

Hearing my family this Christmas was great. I can have conversations around a dinner table, not just w/ the person next to me. The cochlear implant is the best gift I have ever received. At this point, things are not perfect...but I am confident they will continue to improve over time and next Christmas I will hear even more. Anyone who is reading this trying to decide whether or not to get an implant, you cannot imagine how much better hearing is with it than a hearing aid. Getting the implant was the best decision for me...check with your doctors and audiologist to see if this is something that will benefit you. You have no idea how much you're missing and how much better life can be. To all my cyborg friends: Happy New Ear!

Some truth

When I have time or inclination, I participate in a group blog activity called "Five Minute Fridays," where women around the world link blogs together. The topic is pre-selected. Today's topic is "truth."

We all learned from Jack Nicholson that sometimes we cannot handle the truth--well, not always.

Here are some truths that are hard for me to handle, often on a daily basis:

1. I am profoundly deaf. Some days are just not good hearing days. I am so blessed to have a cochlear implant and hear better than before--but I still miss a bunch. I have to remind the people I work with (students and other teachers) that I am still deaf and need them to speak to me and speak one at a time.
2. Past mistakes continue to haunt me. Decisions made in the past have long term effects.
3. You do the best you can and hope that's ok.
4. Living in the world of woulda, coulda, shoulda will make you sick.
5. Children grow up way too fast.
6. Parents age way too fast.

I learned a few new truths this year and want to share them with you. If you've read my blog at all, you know that my implant surgery was up there in "big miracles." The insurance told us "not covered," yet it was (big deal when a procedure is >$100K). This was my first really, really big answered prayer. I've seen these "biggies" in others' lives, but not usually mine. I have felt God's hand of protection on me this year, and His hand of provision.

 Recently, I've been praying for Christmas. Specifically, for some cash to provide Christmas for the kids. Yes, they're older and can get along with less...but Christmas is fun and more so with a little something under the tree. After 2 years of unemployment, the hubs is working...but he's self employed and it's feast or famine. It's been famine of late, so I've prayed for Christmas. Again, I see God provide cash to others, not me (even though the Bible says in Philippians 4:19:And my God will supply every need of yours according to his riches in glory in Christ Jesus. I felt kind of selfish and a little silly asking for provision of cash,especially when so many are really suffering. However, my God knows my needs. It was with great joy and surprise that very day that I prayed that I opened an email from my publisher to see that I had a 3rd quarter royalty check coming! I co-wrote a little book about West Point and mostly sell out of my basement...but apparently more and more books are being sold on Amazon. Woot! Surprise Christmas $ sent via God!!

So the greatest truth of all my truths is this: God loves us and has a plan for our lives ("I came that they might have life, and might have it abundantly" [that it might be full and meaningful] (John 10:10). 
Why? Because he sent some cash?? Absolutely not...because day by day, hour by hour He reminds us that He is there and has our best at heart. His love doesn't change. He doesn't change...and when I need to remember that, He tends to send reminders--sometimes in the form of Christmas cash.

Five Minute Friday: Grace

Grace: A manifestation of favor; mercy, pardon; undeserved gift.

It's kind of funny that the word for this Five Minute Friday (an online linking of blogs) is "grace." It's a topic I've thought a lot about lately, in both spiritual and worldly applications. Here are some random thoughts on it.

• First (and most importantly): Ephesians 2: 8,9 For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— ⁹ not by works, so that no one can boast. Because of the grace of God I have the assurance that I am forgiven and acceptable to Him. There's nothing I can possibly do on my own: it's all Grace. 
• Sometimes people treat each other so poorly. I see this at school every day. I see kids treat each other terribly. I see adults treat each other with no respect or care. I see it at the mall, at the store, the theater. Everywhere I go, people are just terrible to each other. How about if we choose to offer each other some grace instead? What if someone is just having a rotten day? Perhaps we can choose to respond instead of react. Offer a little grace to the next person, instead of biting his/her head off....see where that gets you.
• Online. I'm a part of several online communities. Some are forums, some are facebook pages. Mostly I'm involved in groups for West Point Moms (and grad moms) and cochlear implant users/future users. When you speak, you have body language and facial expressions. Not so online. People get so snippy online because they read much more into posts than what was intended. Lighten up everyone! Offer some grace! Perhaps what you think is blatant isn't there at all.

Those are my random ramblings about grace for this Friday. Do you agree? Disagree? What is grace to you?

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.