Category Archives: Cochlear implant

A little sense of freedom

I’m trying to become a contact lens wearer. I used to wear them, years ago, but gave it up for some reason. So I figured it would be no big deal to join that club again.

I was wrong.

With my MS relapse and resulting vision loss in September 2013, I have a significantly unique challenge. While my left eye has the stronger prescription, the nerve damage left my right eye with a very small field of vision. My brain has adjusted since, so it doesn’t even pay attention to what the right eye “sees”. What normally happens when you close one eye is that everything you see shifts to the left or right, right? Well, that doesn’t happen with me. What I see with both eyes is exactly what I see with the left. Meaning my right eye is essentially blind. Where I’m going with this is, when I try to put a contact lens in my left eye, it’s jarring to see my finger coming straight at my eyeball, and it’s impossible not to blink. So I’ve been having trouble putting them in. A week ago Saturday I worked so hard to put them in, and then all day I was feeling frustrated with what I was seeing. I thought it was just because I was outside a lot, and I didn’t have the anti-glare feature that my glasses give me. That night when I went to take them out, I discovered there was no contact in my left eye. After feeling around on the bathroom counter, I found it. All dried up. I had to go back and get a replacement. Then this past Thursday when I took them out, I inspected them before putting them in the case, and noticed a small tear on the side of the left one. Strike two. I know I have to practice and find a system that works for me. The only trouble with that is that contact lenses are not really built for the level of practice that I am subjecting them to, apparently. Not to mention every time I drop the lens I have to fish around for it with my hands because even with the tint on the edges, I can’t see the lens because it blends in. I need high contrast.

All that to say, I ripped two lenses already, and was growing very discouraged. Because when the contacts are in, and I’m walking around sans eyeglasses, I feel so FREE! So uninhibited. It’s hard to describe the feeling, or rather the importance of the feeling. It’s like there is one less thing to worry about, if only for awhile. The literal weight off my ears is fabulous. The cochlear implants are there no matter what, so it gets crowded. With contacts, I can wear sunglasses come summer, I can run without having my eyeglasses slide down my sweaty nose, and I can swim with my kids and read lips and recognize faces!

I went back to the eye doctor today and she suggested getting some color contacts, which would be much easier for me to see, making the inserting process much easier and hopefully minimizing the risk of tearing the lenses. The only problem is that the colored lenses cost twice as much as the clear ones. That and the colored portion does seem to interfere a smidge with my field of vision. I’m wearing a pair right now with no prescription in them, just to try out.

So now all day I’ve been debating whether it’s worth the extra cost, and whether that smidge bothers me or not. I think the Smidge (I’m calling it that now, I may as well capitalize it) is very slight and I don’t really notice it once I get focused on other things. And after writing that last paragraph about all the benefits of contact lenses, I think I’m leaning toward going ahead and getting them ordered. I swear, I’m so indecisive at times I drive myself crazy.  But I’ll give it another day or two just to be sure. That would make Wednesday my deadline for making the decision. So there, Wednesday it is!

How’s that for letting you in on my thought process? There were other things I wanted to blog about but they will just have to wait for the next one. Happy Monday, y’all!

 

Living in color

Today I helped out at my daughter’s Girl Scout troop meeting. It’s fun, being able to do stuff like that. And I know she loves having me a part of it too.
But dang, you throw a mess of six year old girls at a table full of crafts, and you have a hearing challenge on your hands! They all want to talk at the same time and when they do, they don’t speak very loudly. So when my cochlear implant batteries died off halfway through, it really didn’t bother me too much. I was mostly relying on lipreading, body language, and facial cues either way. The girls mostly raised their hands when they needed help, and I was usually able to guess what they needed. Escorting a few girls to the restroom to wash the glue off their hands was quite the adventure. Just watching them all giggling and smiling was fun. It kind of felt like I was in a silent movie. Like Buster Keaton or Charlie Chaplin, but in color. So weird.
I will say, however, that it did pose some unwanted challenges as I was unable to chat with the adults. That will hopefully be the last time I forget to put on fresh batteries before heading out for the night!

Notes under the door

When I have my cochlear implants on I can hear and understand a good majority of things, but when they are off I hear nothing. It’s true I had lost the majority of my hearing before I was implanted, but the surgeries removed what small level of hearing I had left. It’s just one of the very slight downsides to getting cochlear implants, no sweat. But what that means is that I am 100% deaf when I’m not wearing the earpieces, which is mainly when I’m sleeping and showering.

My kids understand this new reality and have adapted. If they wake in the middle of the night and need their mom, they use sign language. If that’s not sufficient, they get an earpiece and battery from my charger on the nightstand and hand it to me to put on.

And as you can see from the photo, when I’m in the shower and they want to tell me they are going outside to play with a neighbor, they leave a note under the bathroom door!

image
Note under the door

Kids who live with a deaf parent learn to be creative. My kids are so smart and resilient and I couldn’t be prouder!

Getting back to it

I’m back! The illness is gone. We have recovered. We all came through unscathed; my husband and the dog both managed to avoid it altogether (I do hope I’m not jinxing my husband by saying this).

I got back to working on the book I’m writing. I gave myself a deadline of 12/31/15, which is quite aggressive I know, but I also know I have to do such things to keep me from giving up altogether. Deadlines motivate, y’all. The book is a memoir of sorts, so it’s not a cut and dried process. I understand this, and know full well that I may not have a rough draft by my deadline, but progress is progress. Phleh.

I had a thought today (while in the shower… all my favorite ideas come to me while I’m washing my hair) that maybe I will start blogging every day. That sounds like another aggressive goal, doesn’t it? Well, I’m not talking about writing good stuff every day. Just every day, I will plan to share my favorite thought or event from that day. I use the term “event” loosely, as it could be as lame as “the dog didn’t piss me off today, and here’s why…” To make this daily occurrence even more exciting for you loyal readers, I would give it a snarky name, like The Daily Snippet. Or to be more true to how it will likely end up, The Sometimes Daily Snippet. What do you think? Wanna play along? Some days you may be totally bored with it, and others I may just get lucky and strike a funny bone. You just never know, you know? Sounds exciting, right? Let’s start here…

Today’s Daily Snippet:
I love Pandora. It plays the old stuff, the stuff I remember, pre-hearing loss. The songs and rhythms that are familiar to me are the only types of music I can enjoy at this point, with my cochlear implants. I’m told it will get better with time, and to just be patient. Listening to familiar songs is supposed to help. Thank you Pandora, for helping my brain re-learn how to hear and enjoy music. And thank you Beck, for being your funky cool self 🙂

Also notable today, I did some rearranging around the house and that always makes me feel happy. Helps me forget all the evil going on the world right now, if only for a moment.

Hug your loved ones today, and every day. Peace out!

It’s almost like I’m really starting over

This letter came yesterday, sent to my new address, from my audiologist’s office. I’ve been seeing them for two years, since I first lost my hearing, and they have performed tests, administered steroid shots in both my ears, implanted cochlear devices in each ear, and conducted numerous follow up meetings to program those devices.

image

Just when I’m ready to move on, they want formalize our relationship. Geesh. And how did they get my new address anyway? Weird.

Memory Fail(s)

Funny story (to me, anyway): This morning started out just like the previous few; ease out of bed, pack lunches for the kids, wish them well as they leave with Dad to go to zoo camp… Then I watered the flowers, made some coffee, and sat down on the couch to relax and do some reading. Forty-five minutes later I hear a honk, and the dog started barking. Perplexed, I got up to see what was going on. There was a white Spec-Tran van in my driveway. To pick me up. For the hair appointment I made just two days ago.

Oh, I was frantic. They don’t have to honk, and they certainly don’t have to wait for you to get dressed because you completely forgot they were coming. So I opened the front door, waved to let the driver know I was aware and coming, and rushed back to the bedroom to put on a bra (because I was still in my pajamas). The whole time – a matter of seconds that felt like eternity – I was praying the driver would not leave me. I hurried to put Piper in her crate, slipped on some shoes, grabbed my wallet and purse with a last minute check for my keys, and headed out the door. The sense of relief as I rode in that van was extremely gratifying.

Then as we were nearing our destination, the driver asks me if the address is 4020 (they often do this, which frustrates the crap out of me because they have GPS and I’m deaf, and it’s just hard and usually extremely unnecessary) and I say yes, that I believe it was next to a Quality Dairy, but I wasn’t sure because I’ve only been there once before. But then he pulls in to the salon’s parking lot and it’s there, right where it always has been, and the nearest Quality Dairy is at least 3 blocks away. Another memory fail. But here’s my note to Spec-Tran: don’t take navigation advice from the unlicensed deaf/blind girl. Her memory is like a sieve.

Minor mishaps, really. I was there with plenty of time to spare. I got a real haircut, and afterwards was able to chat with the stylist about cochlear implants. She had seen a video on Facebook showing several people, of all ages, reacting as their implants were activated. She was fascinated by the miracle of it, even though she knows she can’t come close to knowing what it’s like. She showed me the video, smiling the whole time, and her eyes just sparkled as she watched; she seemed to really “get it”. So it was just a good moment, to share in the awe of the CI miracle with a hearing stranger. It really is a miracle.

And then I called Spec-Tran (yes! with my cell phone!) to get picked up (we were done much earlier than I expected). When I got home I changed out of my pajamas (lol), let Piper out of her crate, and poured that cup of coffee that had been waiting for me. It’s good to be alive.

Bilateral hearing rocks!

This is exciting news. I didn’t know what to expect with the second cochlear implant, but I was told it’s different for everyone, and that quite a lot is possible. I had zero hope of ever hearing pitches normally again.
But guess what happened tonight? I was talking with my husband, telling him good night, and when I got to the bathroom to brush my teeth I looked at my reflection in the mirror and it occurred to me that I had just been hearing my own voice. MY VOICE. Which I hadn’t heard in almost two years. And you know what? I think I’ve been hearing real voices all day! It’s as if some thing in my brain just clicked. I’m so excited to hear more tomorrow, when I will actually be paying attention. To my son’s voice. To my daughter’s voice. And I’ll be hearing what they hear. Right?
I’m just in shock, I can’t find the words. I’m listening to my old ipod, with my favorite songs from before when I was a hearing person. Tool, Cibo Matto, Rusted Root, Over the Rhine, while still quite tinny, the notes are all there. The notes I remember. In my ears. And I’m not sleeping. This isn’t just in my dreams. It’s as good as real.
No words here. Just tears of joy. Indescribable joy.

CIs and pitch differences

My son has been humming a song by Fall Out Boy for the last week or so (called ‘Centuries’ I believe), and to my ears it sounds just like a song I used to hear on the radio when I was in high school. I couldn’t remember what it was called, but I kept humming it for Luke to ask him if it was the same as his song. Well, he couldn’t really tell me one way or the other, so we decided to look it up online. A quick internet search of “do do do do dododo 90’s” brought us to Tom’s Diner by Suzanne Vega, and I knew as soon as saw the title that it was the one. I let Luke listen to it (as I sat nearby, reminiscing), and he confirmed that the beat was the same, but the melody was not. So it’s mainly the pitches that are entirely different. Luke and I both agreed it was rather interesting, somewhat amusing, that to my CI ears, his song sounded just like my song. Interesting, indeed.

Bilateral CI Success

Tuesday most of the day was taken up with a return trip to the audiologist. I was activated last Tuesday, June 9th, so this visit was just to see how I was doing with the left ear, and to make some more adjustments to the volumes on the electrodes. The volume for the left ear was overall too low, so I noticed a big difference after these adjustments.

The biggest change so far, the biggest improvement and blessing from the second implant, is that the tinnitus is greatly reduced. It is almost gone completely, when I’m wearing both processors. That has been a pleasant change, and one that didn’t come until this week’s adjustments. It’s so nice, so peaceful, to have ACTUAL silence. Which is ironic, right? Because before, I was profoundly deaf, not able to hear real world sounds, but there was still perceived noise going on in my head, and I had sort of become accustomed to it. Yet I guess in becoming accustomed to it, I hadn’t realized how much it bothered me. And now that it’s gone, I’m loving it. And I don’t even care that the left side is still slightly sore from surgery, or that these implants are bulky, or hard to style my hair around. Those things could be nuisances, but they aren’t. They just don’t bother me.

Because I am loving the silence. That is strange to say. From someone who unwillingly lost her hearing in a matter of days, nearly two years ago? Someone who has endured countless medical procedures and tests, including two surgeries to regain her hearing? But hearing the things going on around you in reality is far different than hearing the incessant ringing going on in your head. Because tinnitus really is all in your head. So yes, all of that was worth it to get relief from the ringing. Of course, if that were the only benefit I would say it’s overkill. They still haven’t found a cure for tinnitus. But hearing again, the real things and ONLY the real things, is wonderful. And it only gets better from here. I am looking forward to more double CI joy!

I’m having fun

I haven’t written much lately because I’ve been busy enjoying my time with my kids. That’s the best excuse, if you ask me. The trouble is, these experiences we’re having here at home make great stories for blogging, if only I could carve out the time to actually write. I will, I promise. Because it’s what I love to do. So stay tuned, the stories will come soon enough. And then you’ll read all about the cooking and cleaning and walking and playing. I will even do my best to make it interesting for you as it was for me.

Coming soon…
Bilateral hearing
Bird poop
De-cluttering with kids
Donuts in the park
Pancakes and again, pancakes