Category Archives: Cochlear implant

Finding music

I cleaned out three purses today. Yes, three. And that is just scratching the surface. I won’t even tell you how many purses I have hanging in the closet.

Anyhoo, It felt good to clean them out, and even better to have found my old ipod. The one with all of my favorite music on it that I somehow lost two computers ago. Maybe. Well, I was able to pull up all the songs on my laptop so I can listen to it through my CI remote (The Phonak Compilot) IF it successfully connects. Which most of the time it does not. But maybe I just need to restart. The additional good thing about this is that I was able to upload many of the songs from my laptop to my Amazon cloud drive thingamajigger, and from there I can listen from (and possibly download to) my Kindle. Which almost always connects to the ComPilot. Yee. F-in. Ha.

And now I can start to listen to the songs I know and “practice” hearing music again. And hopefully enjoying it too. I know it’s possible because other CI users say it is, and I have had blips of musical enjoyment here and there. Like yesterday in the truck when Beastie Boys’ “Pass the mic” came on the radio. That was super fun and brought back lots of great awful memories of my young adulthood. I listened to Beck’s “Loser” just now and that was pretty fun. Crazy stupid lyrics that I will probably never forget. So here’s to future CI joy and music enjoyment.

Get crazy with the Cheez Whiz!

Phone Talker

I have never been one of those people who enjoys talking on the phone, so it didn’t bother me so much when I went deaf. However, talking on the phone is extremely convenient and useful (as opposed to texting and emailing).

One of my fellow CI friends recently asked how I was doing at talking on the phone. I regrettably responded that I hadn’t tried yet. The fear of failure and frustration was just too great. Well, then I had some major trouble communicating with my mother-in-law on Sunday as she was trying to return my children. I decided then that I would bite the bullet and give it a shot.

Feeling self-conscious, I was only willing to try a phone conversation with someone who really understands how I hear (and how I don’t), so my husband, Mike, was the lucky guy. I called him yesterday at work. From my phone! Imagine that! He speaks clearly and slowly, and I think I understood most of what he said. The call went surprisingly well, and it gave me the courage to try it with a friend. She had been with me during the trouble with my mother-in-law, and she knew how nervous I was. We had a successful conversation, but I know I missed some things she said because we are both chatty people and ended up interrupting each other with giggles and random interjections! However, it still left me feeling pretty good about the future of my hearing and the progress to come.

Today I even Skyped with my mom, and this time she didn’t have to type her words to me. She could just talk to me. It was so wonderful. I am so grateful for this implant. I feel like so much was stolen from me last year, and the ci has given much of it back. I’m at a loss for words now. Hallelujah.

CI Education

I am finding that as I am learning to hear with my new cochlear implant (CI), I also need to teach others how to talk to me. Because as the audiologist reminds me, I am the only one who knows how I hear things, and therefore I am the one who must educate others. Deaf people with CIs may have similarities in how they hear, but will likely experience it very differently from one another. So, even if someone knows someone else with a CI and thinks they know, they need to be open to learning how each person hears. If they want to be heard, of course.

So, hear are the main things I tell people:

  1. Speak at a normal volume. I’ll tell you if it’s not loud enough, or just turn up the volume on my earpiece.
  2. Clearly enunciate your words as close to naturally as possible (unless you’re my family from Georgia, then just talk like a Yankee, for Pete’s sake).
  3. Make sure I can see your lips moving, and if you must turn your head, stop talking before you do.
  4. Surrounding noises, if loud enough, will drown out your voice. If it’s constant background noise, I may not be aware of it, so let me know it’s present and suggest to move to a quieter spot.
  5. Sudden loud noises, like a door slamming or a car alarm going off, will completely take over, and essentially interrupt what you are saying. If that happens, I will likely just ask you to repeat whatever you just said.

Above all, be patient. And please, don’t ever throw up your hands and say “never mind”. Just like any hearing person, deaf people want to communicate with others. I was deafened late in life. I did not grow up learning and communicating with others through sign language. Speaking verbally with others is all I know, and it’s extremely important to me. I, like so many others, took a leap of faith to have a computer permanently implanted into my skull. So you can bet with 100% certainty that CI users CARE about hearing what you have to say. I know I do!

Grandma Deb

I had a heck of a week last week. All good. My mom was visiting from Oklahoma, and it was wonderful to spend time with her. On normal days we Skype, so it was refreshing to have real interaction. She came with me to my audiologist appointment, and then we went shopping and had lunch afterwards. That was Monday, when the kids are at daycare. We had the kids home the rest of the week, which changed everything. The kids had a great time with Grandma Deb, and she took them to Jumpin’ Jax (a local bounce-house playground type thing). She also got to see Luke play baseball, and we did some shopping for yarn so I can make afghans for the kids. She helped me sort through Natalie’s clothes for the items that no longer fit, and then took us to Goodwill to drop off a whole trunk load of stuff we no longer wanted.

So while we got a lot of work done around the house, we also had a lot of fun as well. We never did get to decluttering that damn hall closet. Oh well. I’ll get it handled eventually.

I have always been close with my mom, so it makes me happy to see the kids connecting with her so well. They each have a lot of her character in them, and it’s even more apparent to me when she’s around. Natalie has her artistic streak, loving drawing, coloring, and dancing; Luke has her creative problem solving abilities.

When we first planned this visit we expected that I would need more help, but I think we were both surprised at how well I was doing, especially with the kids. I was able to show Mom how well I can hear the kids now that I’m getting used to the cochlear implant, and also how well the kids were adjusting to it. I will always be making adjustments, but we’re headed in the right direction.

By the end of the week, I was pretty fatigued. Partly because of all the work we did, but partly because I was due for my monthly Tysabri infusion. It’s the medicine I take to manage and hopefully slow down the progression of multiple sclerosis. I noticed a few months back that I get more and more tired leading up to the next infusion. So, three weeks of fairly normal energy levels, and one week of rapidly progressing fatigue. It’s good that I can recognize this, so I’m not feeling hopelessly frustrated to be so doggone tired for no good reason. It’s unfortunate that Mom happened to be here on that fourth week of fatigue, but in a way I’m grateful, because she was happy to help and quick to recognize when I needed to rest. And, being my mother, she is not shy about telling me to take a nap when I need it.

All in all, it was a great week. Summer is flying by, and the kids will be back to school in no time. We plan to continue to enjoy every moment we are given, and thank God for all the blessings. Carpe diem!

Re-learning to talk to Momma

I don’t think I’ve mentioned it, but last year, very shortly after I lost my hearing, I also got very sick and was struggling to stay awake. I guess you could say I had “checked out”. In addition to falling asleep all the time, I couldn’t answer simple questions, and I was losing touch with everyone and everything. It was very scary. One thing that grieved me the most at the time was the way my children were affected. In particular, my daughter. She was 3 years old then, and had no idea how to communicate with me. She was lost, seeing me lost, and she just sort of gave up on me. Once I got better and regained my cognition, it broke my heart to discover the major disconnect between us.

My mom had flown in to stay with me as I recovered, and it took her two seconds to see what had happened with Natalie. She didn’t waste any time teaching Natalie how to communicate with me, telling her to make sure she looks at me when she speaks, and to speak slowly, and use hand gestures and simple ASL. Natalie soaked it up like a sponge. As she saw me respond to her, she opened right back up. What my mom did was such a gift. When I thought I had lost my daughter, she found a way to give her back to me.

And now? Now, as I’m learning to hear again with this cochlear implant, I am having to teach my kids all over again how to *talk* to me. Audibly! As it turns out, my daughter had a habit of mouthing her words to me, with no sound, so I’m having to continually remind her to use sound. And as I remind her throughout the day, she gets better and better.  Just in the past couple of days she is really picking up on the “normal talking to Momma” thing, and I am loving hearing what she has to say. She has a fabulous, sweet, funny personality. And I sat her down after her bath tonight and told her so. I told her that I had really missed talking with her, and I am so thankful for my “new ear” so that I can hear what she has to say, and I can hear her giggle when she makes a joke, and of course I started to cry as I was telling her this. But this girl, she understands “happy cries”, and she was not shaken or scared. In fact, she threw off her bath towel and stretched her arms out to give me the best hug ever. And we held each other while I silently sobbed on her shoulder.  

I’ve had these sorts of moments with Luke as well, but I have a different sort of connection with him. Luke and Natalie are so unique, yet both possess the same kindness and understanding. Luke has done very well with the changes my implant has brought. He still likes to use ASL to ask to play video games, but I don’t correct him. I think he does it both out of habit and for fun. When he makes a loud noise or laughs, he knows I can hear him so he looks over at me and smiles his big (toothless) grin, seeing that I’ve heard, and we just stare at each other with sparkles in our eyes and joy in our hearts.

I am starting to really experience what one of my new cochlear implanted friends always signs her messages with… with CI joy,

 

Cochlear implant progression

We met with the audiologist again today. The Advanced Bionic rep was there again, which is extremely helpful. I think the audiologist is not as familiar with the AB brand as the Cochlear brand, so she often has a puzzled look on her face. Not so reassuring, but she’s learning. So today they made a lot more adjustments to the volumes for different types of sounds, and the clarity of speech. After today’s adjustments, I’m feeling a lot more confident in social settings already. And since we are heading to my family’s week-long reunion extravaganza tomorrow, the timing couldn’t be better. It will still be challenging, but not as challenging as it would have been.

Today the audiologist gave me the remote for my device, which is called the ComPilot. The ComPilot is used to adjust volume, change programs, and connect the earpiece to other electronics through Bluetooth technology. Yes, my earpiece is equipped with Bluetooth. Can you hear me now?? The answer is, not really. It connects, but it’s a choppy connection, so we have some work to do with that. But it’s not a crucial piece at this point. At this point, I have enough to do practicing understanding speech. One day at a time, dear, one day at a time.

Blessings for all

“Seek [God’s] kingdom, and these things will be given to you as well.” – Luke 12:31 (NIV)

It’s safe to say I’m really enjoying life with my new ci hearing. It’s amazing to rediscover sounds I haven’t heard in almost a year. Yesterday it stormed, and I was able to hear (from inside the house!) the rain and thunder. And though voices sound artificial, like the cartoon chipmunks or people high on helium, the rain sounded so real. And I know from talking with other ci recipients that it only gets better from here.

Last night as I laid my head on my pillow for the night, I was thanking God for this miracle, and telling Him how wonderful it was. And then He said something to me (when thoughts come out of nowhere, I know it’s Him). This is what He said. This is so exciting. Ready? “This isn’t IT. There is more to come.”

God loves to bless His children. He has blessed me and my family, and He won’t stop there. Really? More blessing? Yes. There is more to come. But the even better news is that I am no exception. You are His child as well, and He wants to bless you too. In fact, He probably already has, and maybe you missed it. So, do this today. Be on the lookout for God’s blessing. And if you have trouble with accepting it, stop that. Just let Him bless you.

First Impressions

Today was the day my first cochlear implant was activated. I wasn’t sure how it would go, but I went in with an open mind, and I’m glad I did. Here are some of my first impressions:

1) Everyone sounds like chipmunks. So when they turned it on and started talking to me, I sat there, grinning like an idiot, trying not to giggle (I failed).

2) Natalie told me she loved me, and I told her I loved her too, and then I started to cry. This is what I was waiting for. I think a lot of times she speaks without sound when she talks to me, and in a very exaggerated way, so it’s going to take some learning on her part to remember to talk normally again. But thankfully, she is a smart girl and a very quick learner. I think as weird as it was for her when I went deaf, this is also a new kind of weird. So we’ll journey this weirdness together.

3) When they were setting the base volume level, they played a series of beeps. I had dried my tears from before, and this just got them going again. It’s been 11 months of having nothing sound real or normal, and those beeps, those sounds, they were beautiful. Beautifully real sounds.

4) On the drive home I could hear the beats to the music, and the road noise from the tires, and I just stared out the window. And again let the tears fall. I was struck with the simplicity and normalcy of sound. I believe I really had forgotten what I had lost. The memory of it, and then the reality of it being returned to me was just overwhelming. Simple sounds we all take for granted. The shuffling of papers, footsteps around me, my own husband’s voice. These are all things I took for granted, and they were taken from me. Yet for some reason only known to God, they are being returned to me. To say that I am grateful is a colossal understatement.

These past 11 months have been a journey, and today is the next step on that journey. I thought at first that it was a new journey, but I think that’s wrong. What I have been through has shaped me in ways I am still discovering, and it has made me who I am today. I am more patient, more courageous, more thoughtful of others. Stronger, yet tender-hearted.

Yet, still Mindy.

Morning soundtracks

You know how some alarms can be set to wake you up with music? Yeah, I kind of have that going on in my head now. It doesn’t necessarily wake me up, but I do have music playing in my head very soon after I wake in the morning. Last week I think I mentioned one day it was Pearl Jam. It’s such a strange variety, I really should have been keeping track all along. For example, yesterday morning it was an old children’s song we used to sing. “On top of spaghetti, all covered with cheese, I lost my poor meatball, when somebody sneezed!”. This morning it was one of my favorites, “Some Nights” by Fun.

Music is a big deal to me. Clearly. So it was a huge loss when I lost my hearing. You lose so much more than just your hearing. But, by George, tomorrow I’ll be heading down the road to hearing again, when my cochlear implant is turned on. Activation Day. TOMORROW! I don’t know how it will go, or how soon I’ll be understanding speech or enjoying music, but I am praying that it comes sooner rather than later. Later sucks. We vote for Sooner.

I wonder what tomorrow’s morning song will be? Perhaps a little “Eye of the Tiger”?