Category Archives: Deafness

One Day More!!

I know I should be listening to my Les Mis soundtrack because I’m going to the show tomorrow!! I’m so freaking excited I can’t even say it without exclamation points!!

I was listening to it, until my daughter came home. I had to take a chill out break and pull out my old Billie Holiday CDs, because she came home yesterday and was so excited to tell me they had learned about good old Lady Day.

I hadn’t listened to these in probably a decade so it’s interesting to hear how they sound with mechanical, bionic ears. It’s not pleasant, but it’s not terrible either. I’ve had to lower my expectations with music. The melody, the jazz, is quite soothing. I could get used to this, I think.

Anyway, back to Les Miserables!! We’re going tomorrow!! Though it’s the first day of March, so of course it’s supposed to snow. Typical Michigan. In like a lion. Bleh.


The Social Security Office

I had to visit the Social Security office today. Here’s the long version (because that’s the only way, really):

I’ve been receiving Social Security Disability Income for a full two years now. After you’ve received benefits for two years, they automatically enroll you in Medicare. I have health insurance through my husband’s employer, so I wasn’t real interested in Medicare, but if it’s free, I guess I can’t complain. What I learned, however, is that Medicare comes in different forms, and the two I was enrolled in were Part A (hospital insurance) and Part B (medical insurance). Now Part A is free, but Part B is not.

Now Part B could be advantageous, if it covered what my current health insurance doesn’t, and saved me more than I would be paying for the premium. But I never looked into it, because I learned that my participation in Part B would deem me ineligible for another program I’m part of. I currently receive assistance paying for my monthly Tysabri infusions (for MS, $20,000 before insurance PER infusion), and if I didn’t receive that assistance I would be stuck with about a $5,000 deductible. (I did warn you this was the long version.)

So basically, I could pay $120 per month for Part B Medicare and possibly $0 deductibles OR I could pay $0 premium and definitely $0 deductible. Now I was a straight A student, and I went to college. I chose the latter.

Simple, right? Not so. In March, when they sent me my Medicare welcome packet, I returned the card stating I was opting out of Part B. Then June came, and with it a welcome letter – and a statement of my insurance premium for PART B. I called to say W-T-F and they told me that was just a standard letter and that I would receive another one telling me it had been cancelled. Another month went by and my benefits came, less the $120 for Part B premium. I was not so happy, and I called again. They acted like they knew nothing about my opting out, and told me I needed to sign a form requesting cancellation, and that they would mail it to me.

At this point I didn’t believe a word they said, but I gave it a week to see if the form showed up. It did not. I called once again, but this time made the call to the local office, in case I needed to make an appointment. They said an appointment was not needed, but that I should come down and they would get it all straightened out. They made it sound so easy but I was still doubtful. I made arrangements (thanks Grandpa!) to get to the office today and guess what? It really was easy. The hardest part, literally, was signing myself in at the kiosk to get in line, when they asked me this question:

Are you….
1) Blind/low vision
2) Deaf/hard of hearing
3) (to be honest, I really don’t remember what was after those first two, but I was looking for an “all of the above” option)

I waited for about an hour, which is what they warned me it would be, and when they called my number I had to ask a few of the people waiting where #10 was, but they were all happy to direct the obvious newbie to her station, and I found it just fine. The gentleman was exactly that, a gentleman, and immediately put me at ease. He reassured me that cancelling was a simple process, and showed me where to sign, and before I even had a chance to ask, he was telling me they would be refunding me the two months of premium I had already paid, and the check will be on its way within the week!

I was so pleasantly surprised at how smoothly it went and I felt pretty silly for having been such a nervous wreck. No worries though, it’s done now and I can move on with the rest of my week. Is it really only Monday still?



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!

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 🙂

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!

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.