Category Archives: Deafness

One is silver and the other’s gold

There’s a song that my daughter sings in Girl Scouts that I remember singing when I was a Brownie Scout in elementary school.

Make new friends, but keep the old.
One is silver and the other’s gold.

I’m sure there’s more to it, but that’s all I remember. It’s ok though, that short bit holds all the meaning I need.

I have several dear friends who I’ve known for a long time. Decades even. These dear friends are women who I know I can always call when I need them, and even when I don’t. Sometimes it’s just fun to chat. These are the friends who came through for me and my family during our darkest days, and they helped shoulder the burden of our most challenging struggles. Every day I am thankful for these friends.

Then there are the newer friends, most whom I’ve met post disability and deafness. They only know the newer version, yet my disability is not an issue. It’s just a characteristic, and a minor one at that. These are friends from my support groups, from our new neighborhood, and from our new home town. These new friendships are both scary and exciting (I keep saying I feel like I’m the new kid in grade school all over again). These friends are people I’m really enjoying spending time with and getting to know better. Every day I am thankful for these friends.

Silver and gold, I’ve got em all. In abundance even! But most importantly, I am learning from all of them how to be a good friend. Learnin’ from the best 🙂

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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!

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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!

Why the crockpot is my new best friend

This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.

But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.

Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge.  Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.

It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.

The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉

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.

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!

Lame Recap of a Wonderful Weekend

We’ve had a lot going on around here. This weekend was busy, and leaves me longing for Monday, when I can truly rest. Saturday was the Walk4Hearing, which was fantastic. Ir was raining a little, but it was tolerable. The temperature was nice for walking. I didn’t walk, of course, because I was still in surgery recovery mode. Instead, I borrowed a wheelchair and my friends were eager to push me along the way. Luke came with me, and it was a lot of fun to see how excited he was to be there to support his mom. He was amazed at how many kids were there, and how many had hearing aids or cochlear implants. Who knew hearing loss affected so many young people?

Then there is today, Sunday, the 8th anniversary of my son’s birth. Yes, it was his birthday. A day to celebrate, for sure. On these birthdays I think a lot of our seven year wrestle with infertility, and thank God for eventually healing me and for giving us two wonderful children. Luke was really excited to turn 8, and he talked about all the fun things he has experienced in his 8 years here on earth. It’s been a fun ride, that’s for sure. I am proud of the boy he has become, and look forward to the man he grows up to be.

I really do have more to say on that subject, as well as others that have been rolling around in my head, but it’s late, I’m tired, and I don’t do well with that combination. My mind works best in the morning, so that is when I will return. Whether it’s tomorrow morning or the next, I cannot say, but I do promise to be back.