Category Archives: Cochlear implant

Cherishing the silence

I’m finding that I do my best thinking when my “ears” are off (my cochlear implant processors). Even at night, when the house is quiet. It’s just a whole different kind of quiet, because all I hear is the low ringing tones of tinnitus and absolutely nothing else. You probably don’t realize there is noise to be heard, but just try plugging your ears for a few seconds and you’ll see what I mean. There’s a word for that noise but I can’t think of it at the moment. Ambient maybe?

What’s funny about me enjoying this silent existence is that it used to terrify me. So much so, that I needed medication just to sleep at night. But 4 years of deafness and now I welcome the silence. It’s helpful to retreat into myself, to focus my thoughts, but mostly I embrace it because it’s now my favorite time to talk to Jesus. He meets me here in the silence. He was here with me every day while I wrestled with hearing loss and vision loss back in 2013, and he’s never left me since. I don’t share this info often, but there was a song I used to sing during that time, over and over and over mostly in my head, and it brought me peace and comfort when not much else did. I’ll post the lyrics below because you might see how unbelievably appropriate it was for what I was going through. The interesting thing about it, no – miraculous – is that prior to losing my hearing, I had only heard that song one time that I can recall. It was in a movie that I watched once years ago. How on earth could I have remembered that song? Only God knows. But boy, did that song ever save me from a really ugly and scary time in my life, and I believe it will now forever be my theme song.

Losing my hearing and vision was an enormous life changer for me, for obvious reasons, but God has used it all to bring about incredibly wonderful changes. The biggest change, and the one I am most grateful for, is that it solidified my faith in Jesus. He showed me through that song, through the support we received from family and friends, through Scripture, through the fact that we survived it all, that He will never leave me.

So. When I’m settling in for the night and am taking off my ears and entering the silence, I am delighted to talk to Him. He is my peace, forever and always, amen.

Jesus, Lover of my Soul

Jesus, lover of my soul

Jesus, I will never let you go

You’ve taken me from the miry clay

Set my feet upon the rock, and now I know

I love you, I need you

Though my world may fall, I’ll never let you go

My Savior, my closest friend

I will worship you until the very end


I suck at consistently writing

Did I really just go an entire month without even thinking about blogging? So much has happened, I don’t even know how to update you properly.

I’ll say I do believe the unplanned hiatus was a result of the medication I’m now on for anxiety. It starting working right away, but I discovered it was actually working a little too well. I went from being anxious about every possible thing, to not caring about much at all. Even the important stuff. So a few days ago I started taking half a dose, and that seems to be working out well. I’m caring again but I’m not having panic attacks, and that makes me very happy. I’m praying that I’ve found the right balance and look forward to moving on with my life.

My daughter turned 8 a couple weeks ago. My precious baby girl is 8. She’s growing up too fast for me. I just need her to slow down. She is currently obsessed with unicorns and animal print – two things I have zero interest in or experience with, so I’m sort of watching her from afar, in awe of her sense of self and unashamed quirkiness. I know she’ll look back on these days and wonder what she could have been thinking and ask me why I didn’t forbid her from making these disastrous fashion choices, and I cannot wait for that day. I was her age during the 80’s, so I have plenty of those groan-worthy memories to look back on.

We threw a party to celebrate right here at the house, with a handful of Natalie’s friends from school and the neighborhood, both old and new. The girls gave themselves Jamberry manicures and ate unicorn cake and rainbow sherbet. Then at the end we had time leftover so the girls put together a fairly rowdy game of Simon Says. It was really something to be on the outside, seeing her in her element and enjoying spending time with her friends. She just seemed so grown up, so “Eight.” It’s one of those days I hope I never forget.

2017-11-11 15.17.45

In other news, I went to a new audiologist today to update the programming of my cochlear implants. While the audiologist I had been seeing was nice and all, we never felt like she really knew much about the technology for my implants. I think she probably dealt more with hearing aids. With my last programming, my husband was positive that it was a big change in the wrong direction, and that I ought to find a new audiologist. Well, I finally did and it certainly paid off. The office only services people with cochlear implants, so that is their specialty. We knew as soon as we walked in that we were in the right place. The visit took a solid two hours but it was thorough and I left feeling a ton more confident about my hearing level and speech recognition. Exhausted, but confident. I’m looking forward to the days ahead, for every opportunity to hear all the typical sounds in a new way with this new and improved programming. Technology truly is a wonderful thing.

In lieu of private journaling

Sometimes I just want to drone on with the ideas swirling around in my head. Normally I reserve those thoughts for my private journal, but today I felt like they were innocuous enough to share here.

Lately I’ve been fairly busy. Not with super important or time sensitive things, but just generally busy. Between doctor visits, Bible study, housework, and spending time with friends, I’ve had a steady stream of activity. And while I don’t hate that, I find it is kind of a new thing for me and a part of me is a little worried that I’ll forget something important. When I was working and going to school I had a million things to keep track of, and it was never a problem. Stressful yes, but I managed just fine. In a way, I think I actually enjoyed staying so busy. Then I was thrust into long term disability – or as I like to call it, early retirement – and now I am learning I need to find new things to keep me occupied.

For awhile I was keeping myself occupied with a responsible schedule of housework. Cooking and cleaning and other general household management activities. However, that was getting so Boring, with a capital B. So now I’m trying to step back a little on those things, because they are still necessary, and make room for some fun activities. However, I never really had many hobbies before, so I’m in what I like to call a brainstorming stage.

I do like to crochet, but I don’t care for the creative stuff, and you can only make so many afghans. Plus, it’s very antisocial because I can’t really crochet with friends. Well, I can, but not like I used to. I used to be able to have conversations with people while crocheting, but now that reading lips is such a crucial part of listening for me, I can really only do one or the other. Listening takes a lot more effort than it used to.

I’ve heard that bars around town have trivia nights, and I think that might be fun to try some time. I am convinced I would absolutely suck at trivia because my memory is horse dookey, but I think as long as it was with friends it would be fun.

I really, really want to try karaoke. I’ve done it twice in my life, and I know people groan when you talk about karaoke, but those two times were very memorable and fun for me. I was never the best singer, and of course I’m even worse now, but I still think it’s fun to sing along while everyone watches and laughs. My husband says I should warn people when I get up on stage: “Hey everyone, I’m deaf. And once you hear this, you’re gonna wish you were too!” You have to be able to laugh at yourself once in awhile, right? And isn’t that what karaoke is all about?

I discovered last night that my favorite afghan has some pretty significant holes in it, which are like cancer to a crocheted blanket, so it’s on it’s way out. This was the first afghan I crocheted with my favorite pattern, so it’s a little sad that it’s dying. BUT, I made it with really cheap yarn and I’ve improved working on that pattern over the years, so maybe it’s time I start a new one, just for me. A new favorite.

When I woke up yesterday I put my cochlear implants on and discovered the right ear processor would not connect. Checked all the cords, and everything looked fine. Tried the left processor on the right side and that worked fine, so I knew it wasn’t my head (the lady in customer service laughed at that). So I’m down to one ear until the manufacturer sends me a replacement. I can’t believe I made it through that phone call with one ear! Pitches are much higher with just the one processor, so everyone sounds like chipmunks. Funny not funny :/ I am not complaining, but it really did spoil most of my day yesterday. It took me a good while to come out of that funk, but I’m better now. I’m finding that with just the one, every day sounds are not as harsh or bothersome, so that’s something to be thankful for. Still, I will be happy to have that second ear back.

Kids have a half day today so they’ll be home soon! Peace and hugs….

Accidental game night?

The children both happen to be grounded from screens tonight, and when they got bored with pretending not to be jumproping in the living room – oh the temptations children must overcome – I suggested they play a board game. They seemed genuinely pleased with my suggestion and ran downstairs to pick one out. Checkers, it is!

They are playing nicely while I watch from my cozy recliner, coffee and crochet in hand(s). This feels so nice and peaceful I might have to make it a regular, mandated activity around here!

My very first reader question!

An interesting question was raised here on the blog earlier this week, and it’s one I felt important to answer. The question? What is a cochlear implant, is it for MS, and does it help?

Well, first off – a cochlear implant is a device implanted into the skull near the ear in order to replace a malfunctioning inner ear. I can’t speak much for the inner workings of the ear, and all the moving pieces natural hearing involves, so I won’t. But the cochlear implant takes the place of the cochlea, which is the auditory portion of the inner ear (Thanks Wikipedia). Basically, the cochlear implant restores hearing.

It’s not a terribly invasive surgery, and most people are able to go home the same afternoon. After one is healed from the surgery, the device is activated with the use of a processor that sits on the ear and is connected via cord and magnet to the implant. It’s kind of fascinating, if you ask me. When the magnet and processor is not attached, I hear nothing. Actually, that’s not accurate. It’s only when the magnet is unattached that I hear nothing. Complete and total silence. But when it’s connected, I’m back in business and hearing again. The processors that hang on my ears look like your typical hearing aid, but they work in a totally different way. Hearing aids amplify sound, but cochlear implants take sound and process it for you, communicating that sound to your brain.

Cochlear implants are only used with people who are permanently profoundly deaf, and who are not helped by hearing aids. It’s nothing like natural hearing, and everyone responds differently to the implants, but in general it’s been a very good thing for me and pretty much every cochlear implant recipient I’ve spoken with. I was a late-deafened adult, meaning I lost my hearing in adulthood. I didn’t grow up in the Deaf community, so it was a severe loss, losing my hearing. I had almost no way to communicate. I was profoundly deaf. I didn’t just lose some hearing, I lost it all. So the cochlear implants have been a huge help for me. I’m able to have conversations with my children, make phone calls (with the help of a captioned phone, usually), listen to music, follow along with church worship services, etc. It’s been a wonderful gift.

I do have MS, and while some people with MS experience hearing loss, my hearing loss was not caused by MS. When someone with MS loses hearing, it’s usually in only one ear, and is not always permanent. I think I saw a statistic that said only 6% of MS patients reported symptoms of hearing loss. My diagnosis was Autoimmune Inner Ear Disease, which affects less than 1% of people with hearing loss (including Rush Limbaugh, who is also a bilateral cochlear implant recipient). How’s that for odds? Maybe I ought to buy a lottery ticket.

I hope that answers your questions, MSersgettingfit! I’m sorry if I went more in depth than necessary, but it’s a big topic for me. Hard to scale it down. I still feel like I left so much out, so if I only raised more questions, please don’t hesitate to ask. Actually, this goes out to all my readers: I absolutely love answering questions, so please feel free to ask away. I am at your service!

Monday, you are so good to me

Happy Monday!! I was feeling pretty grumpy yesterday but I’m feeling a little better today. I went to the YMCA first thing this morning, after the kids were on the bus. I really, really love the elliptical machine. It’s able to work so many muscles in my legs in a much shorter time than walking or running does. So I’m getting a better workout, and I’m not overheating or getting fatigued. Well, I do get a little fatigued, and I have to be very careful getting off the machine and walking back to the locker rooms (next time I’ll bring my cane). I feel weird having to literally pick up my leg to remove it from the machine, and then hobbling across the room. It just seems backwards, that I would be able to exercise fine, but then have trouble simply walking to the locker rooms. But I see lots of people walking around with canes there, so I don’t feel self-conscious about it. Granted, those people with canes are much older than I am, but that’s ok. MS has only taken bits and pieces, so I’m happy to keep working with what’s left.

And now This. This is why I’m straightening my hair. The longer it gets, the less curl it can hold. My hair is thick and heavy, and those curls, while I do love them, just can’t stand up to the weight. Not that I tried to help it along today, as I tend to do with mousse, but even with that the curl seems to fall quicker and quicker. Now that I have the hair at my  implant sites shaved short, I’m able to wear my hair down without it knocking the magnets off. So it’s nice, but it was funny to see what my hair was doing when I walked past a mirror. And that is why I snapped a photo, so you all could share in the laughter! I suppose it’s not super crazy, just different I guess. I’m not used to seeing myself with my hair down. Ever since my cochlear implant surgeries, I’ve been wearing it in the same half-ponytail: every day, basically, for the past two years. It gets SOOO boring. Bleh.

Y’all, I’ve got barbecue ribs in the crockpot for dinner! They are gonna be so yummy and I just can’t wait. What are you having for dinner?

Changes to my hair

So today I went to the salon for my usual trim. During my haircut, I sent this photo to my husband, and told him I was getting my head shaved:


That is, indeed, a razor in my hairdresser’s hand. My husband texted back and said I should ask her if she had a couch I could sleep on. Because he’s a funny guy.

Of course, I wasn’t pulling a Sinead O’Connor and shaving all of it. We were just shaving the small spots where my cochlear implants are, so that the magnets would have a stronger hold. I have thick, curly hair, and the longer it was getting, the more difficulty I was having keeping the magnets connected. Every time they fall off it wears on the cord, not to mention the sudden loss of sound I experience. It’s super annoying, y’all. Anyhoo, my hairdresser has another client with a cochlear implant, and when she moved to town and started seeing my stylist, she already had the implant site shaved, and just has it trimmed back up. When my stylist told me about this, it was the first I had heard of doing such a thing, and I was skeptical at first. But after several more months of frustration with the dang things, I decided to go for it. And let me tell you, I am so glad I did! It is amazing how much stronger the connection is. I could feel the difference right away. I mean, these things won’t budge. I’m loving it.

My next plan is to go back in a month and perm my hair straight. I’ve enjoyed my natural curl as my hair has grown longer (it’s a real pain in the rear-end when it’s short, with all my cowlicks), but I think I’m ready for a change. My husband and my son both like my hair when it’s straight, but when I told my daughter my plans for permanency, she took it pretty hard. She says she loves my curls, and it just wouldn’t be the same without them. Somehow I think she will get over it. We’ll see. She has four weeks to say her goodbyes, I guess.