Tag Archives: Cochlear implant

Cochlear implant, Photos

No one is around, thankfully

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I say that while completely understanding the irony here. I’m not shy.

But seriously, what the hell is up with my hair? I washed it about two hours ago, towel dried it, and have been sitting and reading a book since then. And now there is this:

Wild hair

…which may not be a big deal relatively, but I’m not used to it. Mostly because once it fully dries it tends to calm down, and I generally keep it up in a half-ponytail so it doesn’t interfere with my cochlear implant. However, they tweaked the magnet on the headpiece last Tuesday at the audiologist’s office, and it is staying put much better now. The first magnet was strong enough, but caused pain. The second one didn’t cause pain, but kept falling off. This third time is the winner, apparently. I think only other CI recipients can understand the joy in being able to keep this thing stuck to your head. And oh, being able to style your hair in more ways than just the half-ponytail is pretty thrilling too.

The excitement never ends around here. Ha! Good night, my dear bloggy readers!

Cochlear implant, Holidailies 2014

I didn’t even study!

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Today I went to the audiologist for a special balance test, to make sure a second cochlear implant would not be detrimental. I am pleased to report that I passed my electronystagmogram with flying colors (well, actually just the one… a red dot). Also referred to as an ENG, it measures your eye movements, while you wear some pretty gnarly goggles and follow a moving red light with your eyes. But that’s not the best part. The best part is when they lay you back and blow hot and cold air, alternatively, into your ears. Meanwhile, all that is required of you is to keep your eyes open. And since you are not permitted to consume caffeine 48 hours prior to the test, this proved rather difficult for me. Thankfully the audiologist let me keep my current implant on, so I could hear her instructions. And her constant reminders to keep my eyes open.

After the test they brought me to an exam room to get my blood pressure and talk to the surgeon. The nurse asked how the test went, and I told her it went pretty well, though it was a challenge keeping my eyes open, not having been allowed to have caffeine. She didn’t realize that was a requirement for the test, and sympathized with me immediately. In fact, she was helpful enough to tell me of the coffee shop down the hall. This turned out to be extremely helpful news, and I can’t remember the last time I’ve had a cup of coffee so delicious. But maybe it was just that absence makes the heart grow fonder. Either way, I was extremely thankful for it.

So the conclusion of the day is that the surgeon and audiologist have both given their approval, and we are just waiting for insurance to offer theirs as well. Two out of three so far, and hopefully soon we’ll be scheduled surgery. I will say I am still a smidge nervous about getting a second implant, but am confident that this will be a good thing. I’ve heard from many other bilateral CI recipients and all of them have wonderful things to say about it. It only gets better from here!

Cochlear implant, Kids

Peace and quiet

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Those who know me best (and now you, since I’m telling you) know that I am generally not an angry person. However, a fly on the wall will tell you that there is a dangerous temper hiding deep within. I am thankful for my cochlear implant, but some days it is not so helpful. Especially when I am so ‘hangry’, and the kids make so much noise. For the love of all that is peaceful and quiet, why do they insist on making so much noise? Can anyone make it stop? I can just lock them in the basement for awhile, can’t I? No? Well, sending them across the street to play with the neighbor’s kids works splendidly. Now I sit. And knit. Breathing in and out, over and over again. In peace.

Cochlear implant, Deafness, Dreams, Family, Holidays, Miracles do happen

The most thankful post yet

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This morning I had a wonderful, realistic dream that our family was sitting around waiting for Thanksgiving dinner. Mike’s aunt and grandparents were there, and we were trying on hats, comparing head sizes. We were just talking and having a good time. Like the old days when I was a hearing person. In reality, that was only a short time ago. I lost my hearing quickly, but almost as quickly I was given the gift of a cochlear implant. I remember the fear of complete silence, and I still experience that in bits and pieces (bedtimes, showers, etc.). So while it will never quite be the same, dreams like I had today remind me that it’s possible. It is on the horizon.

Almost literally.

My husband’s family, my adopted family, will be here tomorrow for the food-filled holiday of Thanksgiving. My dream – or memory, perhaps – will become a reality. Laughing together, sharing stories, making new and wonderful memories. Redeeming last year’s Thanksgiving when I ran crying from the dinner table. Last year was the first year in over a decade that we had not hosted turkey day, and I am proud and nervous to be reclaiming that tradition after such a challenging year. We have always felt blessed around this time of year, but this year I think more than most. Last year I was such a mess, but over time God has picked me up and held me, and given me peace and patience and hope. When I had nothing to give, and barely the strength to ask for help, He rescued me. He rescued all of us.

“Amazing grace, how sweet the sound, that saved a wretch like me. I once was lost, but now am found;was blind but now I see.”

Cochlear implant, Music

Songs that sound good to my cochlear implant…

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I’m really trying to stay positive here with this music business. I miss it a great deal, and I realize it will never be the same, but I am going to do whatever I can to make the best of this amazing device implanted into my ear. So I’ve emailed my audiologist and she is going to consult the manufacturer, Advanced Bionics, to see what else she might be able to do to help music sound a bit better. But for now, I just need to keep “practicing” by listening to songs I remember well. And having my old ipod returned to me, I am doing just that.

I’ll tell you what I can’t bear to listen to, and that’s Over the Rhine. They have been one of my all-time favorite bands for well over a decade. I have been to concerts, I own many many albums, and have so many great memories. But while Linford’s piano tinkling sounds are nice, Karin’s voice just sounds way too distorted, butchered even, and that hurts my heart. It is painful right down to my core. I don’t even have the words. It just hurts, that’s all. So… moving on.

Here is a list of songs that are currently mostly enjoyable:

“The Distance” – Cake
“I Feel the Earth Move” – Carole King
“Can’t Go Back Now” – The Weepies (this surprised me, but I think it’s just that I hadn’t heard it in a super long time)
“Bones” – The Killers (good beat at beginning, then torture)
“She Lost Feeling in the Ends of Her Fingers” – Linford Detweiler (see, piano tinkly music good)
“E-Pro” – Beck (it’s all about the drum beat)
“These Arms of Mine” – Otis Redding (“This is Otis. I love Otis.” – Ducky from Pretty In Pink)
“Lifelong Fling” – Over the Rhine (Yay! I found a good one!)

And the list goes on… While it’s still not what it was, it’s nice to find several among the 300+ on my ipod that are tolerable and sometimes even enjoyable to listen to. Party on.

Cochlear implant, Music

Oldie, but goodie

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Did I mention that I found my ipod awhile ago? And then lost it? I was very distressed over this, because I had finally learned how to use a cord to plug my ComPilot into the ipod or phone, so the sound is transmitted wirelessly to my cochlear implant (translation: learned how to listen to music). I have so much of my favorite music on that ipod that it would be great to listen to and “practice” listening with my ci. I sometimes get a little over zealous with de-cluttering, so I had started to think maybe I had disposed of it.

But then, last night my dear daughter walked up to me with a big smirk on her face and my ipod in her hand. She had hidden the damn thing from me. I’m a huge fan of her sense of humor (she loves Mr. Bean) but this went a little too far. I gave her a pass this time though, since it was the first time she’d done anything like this (I think), and it was her birthday, after all.

So this afternoon I am listening to MY music, music that I am familiar with and love. Mostly they all sound very strange and distorted but occasionally a glimpse of a note or a beat comes through sounding very real, and that makes me happy. That happened just now with Carole King. I remember listening to my mom’s Tapestry record when I was little and dancing around  the living room. Today that soulful, raspy voice came through for just a split second and my heart skipped a beat. Or, I suppose you could say I felt the earth move 🙂

Cochlear implant, Deafness

Feeling Normal

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Today I got to meet some very special friends. Tara is the wife of a man my husband met playing video games with online, and their two sons play Minecraft with my son as well. I had met the husband and his oldest son in person, but had only chatted online with Tara. It’s hard to tell with online communications, but we seemed to get along pretty well. As it turns out, we get along pretty well in person too!

But here’s the thing: Tara is blind, and has been since birth. She was born without optic nerves. None. So for her, though she has challenges not common to most, she is used to it. Her husband and sons are used to it. Even her friends are used to it. They are no strangers to disability, and they all seem to know what she needs. Or at least aren’t too shy to ask if they don’t.

The strange thing is that as we were driving home, I was almost in tears, and I couldn’t figure out why. But after being home for awhile and journaling some, it hit me. I spent two full hours in a noisy indoor pool and recreation center, with dozens of strangers, but yet I felt peace throughout all of it. Why? Because no one was fussing over me, or treating me differently, or looking at me with sad, pity filled eyes. Sure, some asked questions about my recent health setbacks, and how my CI was working for me, but it was just conversation. They wanted to get to know me, and that was all.

Do you know how refreshing that is? To feel like just one of the other parents? Not singled out for being disabled, yet still respected for my particular challenges (meaning no one tried talking to me from behind or across the room)? Let me tell you, it’s a wonderful feeling, and I am wishing I could hold on to that feeling for as long as I can. I don’t know how well that will work, so if I lose it we’ll just have to go down and visit Tara and her friends again!

Cochlear implant, Deafness, Motherhood

Bilaterally Bionic

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I am a late-deafened adult, and when I lost my hearing it happened very quickly (within a week of the onset of tinnitus). I now have a CI in my right ear, activated last June, and it is *wonderful*. I am so excited to be having conversations again with my family and friends!

People keep asking if I’ll get one in the left ear as well, and up until a few days ago, I always replied with an emphatic YES. However, I started having serious doubts. When I take off the processor to sleep, shower, change my clothes, or do my hair, I am more aware of the things I AM still able to hear with my left ear. It’s not much, but it’s not complete silence. I can hear loud noises, such as a phone ringing or my daughter screaming at her brother or sometimes even a knock at the door. And though it’s not even close to normal hearing, and I wouldn’t be able to understand speech, it’s still something. And going bilateral would mean, well, silence. Completely. And I don’t know… do I want that? Is that a reasonable price to pay in order to have two good, working, bionic ears?

Knowing there are many people on the Advanced Bionics forum who have gone bilateral, and perhaps also wrestled with these same questions, I posted my concerns and asked for some perspective. I was astounded at the number of responses I received. All held great perspective and food for thought, however one in particular struck a nerve I hadn’t realized was exposed.

PaulW writes:

Mindy,
I wonder if the real issue isn’t fear.
I see that you are a mum. And I know mums are supposed to be perfect caregivers, protectors and comforters. How can you do that if you are deaf? But hubby can hear – right? And there are two children who can learn to look out for each other – even during the night. Teach them what smoke detectors sound like and what to do – i.e. wake you. Teach them not to open the door to strangers and to come and get you. Teach them that if either is sick to come and wake you. I do think that everyone can learn to look after each other and be a secure, strong and safe family. It’s not all on your shoulders! And if truth be told, what can you hear? You might be doing your family a much bigger favor by improving your own hearing and ability to share their happiness, experiences and socialize. That might be your biggest mum gift to them and yourself!

He is right, the issue is not fear. What is the issue? I think it is that I allow myself to have unrealistic expectations of myself. While it may have been realistic two years ago to be able to hear a smoke alarm or whether a kid is crying at night, it is no longer. I am deaf now. Expectations change. My husband knows this, and he certainly doesn’t expect me to hear those things at night, so I shouldn’t either.

But with a change in expectations, we can go one step further and prepare the family so everyone knows what to do in certain situations. The thing is, this is not just for our family. Every family should have fire escape plans. And every child should know who they can come to when they are sick or frightened in the middle of the night. These are things that every family should discuss.

So, back to the burning question of getting a second CI. I still have some hesitation, but if I’m honest with myself, I would say that my left ear is pretty damn useless. I think that I am starting to accept that fact, and am willing to sacrifice that residual hearing in order to gain better hearing by going bilateral. I’m told by many that two is so much better than one. One person said it’s exponentially better, like 1 + 1 = 3. And if I can have better hearing during my waking hours and while I’m with people, being in complete silence all the other times is worth the cost.

Cochlear implant, Deafness, Housekeeping

Productive days and support groups

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Occasionally I have days where I feel like I totally kicked ass. Yesterday was one of those. At 10:51 *AM* I was Skyping my mom to brag about all the stuff I had already accomplished: read my daily Scripture, wrote the meal plan and grocery list for the week, cleaned toilets, bathroom sinks and mirrors, walked for ten minutes on the treadmill, updated my Cozi calendar with the kids’ school calendar, and I showered.

So when my husband dropped my daughter off after noon (half days all week, to ease the kindergartners into school, I suppose), I was ready. Of course, we only had an hour or so to relax because the rest of the day was a blur. I had a follow up appointment with my neuro-ophthalmologist in the afternoon, then we picked up our son from Grandpa’s house, then came home to quickly eat dinner, then Mike and the kids dropped me off at my HLAA (Hearing Loss Association of America) meeting while they went grocery shopping.

Neuro-op visit went well. They tested my eyes again, and found that my right eye is a little worse, but my left eye is a little better. I guess that means I’m even. They used the word “stable” which is much better than “going blind”, so I’ll take it. I don’t know why going blind scares me so much. I know people who are blind, some from birth, and they are otherwise healthy and happy. It certainly wouldn’t be the end of the world. It would only be the end of my world, if I let it be. But we’ll cross that bridge when we get to it. IF we get to it. At this point I guess it doesn’t look like I’m headed there anytime soon. Thank you, Jesus 🙂

The HLAA meeting was wonderful. It’s the start of a new fiscal year for them (the local chapter, at least), so they kicked it off with an “open mic” night. I was excited to go, because I went to the last meeting in June, and to a dinner with the group in July, and already I feel like we are family. Last night was our opportunity to share our hearing loss stories with each other. It was refreshing to hear about other’s journeys, and was nice to be able to share mine as well. It’s amazing how different we all are, in general and in how we came to be deaf or hard of hearing, and yet we have a common understanding and can easily relate to one another. The group ranges in age and background. Some are lipreaders, some know ASL, some have hearing aids, and some have cochlear implants (some even have both!). Some have been deaf since birth, yet some, like me, have only been deaf a short time. Yet when I say being deaf sometimes makes me feel isolated, they all nod their heads in agreement. Because they have been there too.

All in all, it was a good day. Today I was reminded of where I have been, what I have come through, and the amazing gifts I have been given. Hallelujah.

Cochlear implant, Music

Finding music

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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!