Category Archives: Deafness

Rainy days

It’s raining today. Storming, actually. It’s been awhile since we had a thunderstorm during the day like this. We’ve had a couple overnight, but those are no fun because I can’t hear the thunder. I don’t wear my cochlear implants overnight. Usually my daughter tells me all about the storms the next day because though she usually sleeps soundly, she is sensitive to the noise. That and she worries about lightning striking and all that. So it makes for rough nights for her, while I secretly envy that she can hear the thunder.

So. Today’s storm is nice. It’s dark and cloudy though, which makes me want to go back to bed (which I did) and stay in my pajamas all day (which I am). I’m also roasting a butternut squash to make soup, so the house smells like autumn. My sister and I have our annual retreat to the monastery this weekend, and this year we decided against planning an elaborate menu and instead are each bringing a homemade soup. We think between soup, salad, and snacks, we should be set for the weekend.

My plan for this year’s retreat is to get a big head start on my book. I want to read through the past five years of journals in order to get an outline or map of sorts of what I’m going to say. That’s a giant task and not something I feel like I can do sufficiently while I’m here at home. Distractions and all. I am very easily distracted.

I still feel like I have this nagging voice that tells me I can’t write a book, not one worth publishing anyhow. That voice I need to just keep telling to shut up. Lots of people less qualified than me have written books so I have no reason to believe that voice.

What else is going on? I started leading Financial Peace University this week for my church. We have a small group but it happens to be very diverse. People from every walk of life. Newlyweds, single, married with kids, empty nesters. It should make for some really interesting discussions as the weeks go on. I’m very excited to be doing this class. For one thing, I needed the refresher, for sure. But also it just feels good to be able to give back and serve God in an area I feel like He’s given me a passion for. I was a ball of nerves this first week, because my vision loss and difficulty hearing still give me great social anxiety, but everyone was extremely understanding and gracious. I’m confident it’s going to be a life-changing class for everyone.

Speaking of social anxiety, I’m also in a women’s weekly Bible study and yesterday was my first time going. I attended last year and loved it so much, I’m doing it again. However, I had a lot of trouble hearing people in the discussions as well as reading the materials they hand out every week. There’s not a whole lot I can do about the discussion because you can’t expect to completely retrain people to speak a different way just for that one hour a week, so I’m learning this is an area I have to accept not being able to hear everything. I just have to accept and be thankful for the words I CAN hear.

As for the lesson handouts, I had been scanning them into pdfs every week so that I could read them in high contrast on my computer or tablet. That was kind of a pain, but it worked well. It only occurred to me after the class had ended that I should have been scanning my answers to the questions as well, because every week I would get to class and struggle to read my answers during the class discussion. This year I am super excited because they offer the lessons and questions in pdf format, so I don’t have to do all the scanning! It may be hard for others to understand my level of joy here, because until you’re faced with the daily difficulty in seeing and hearing things, you just can’t imagine it. I know it’s something I took for granted, for sure. If you are reading this and you have fully functioning eyes and ears, will you please just take a moment to thank the Lord? Because not everybody has that luxury. It’s so hard, people. Not impossible, just hard.

Well, my squash is roasted so I need to go saute some shallots and garlic and get the soup assembled. After that perhaps I’ll do some crocheting. I’m on my third of thirteen afghans for each of the nieces and nephews. A perfect rainy day activity, wouldn’t you say?

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I guess R.E.M. is still my favorite band

I had several vivid dreams last night and all of them were filled with the music of R.E.M., which is ironic and weird but also really awesome because I was able to hear and enjoy the music with working, human ears. In one dream I was actually chatting with Michael Stipe so that was an added bonus. He was his strange self but also very laid back and easy to talk to. Which was nice because even in my dreams I suffer from a little social anxiety. Ha!

Those types of dreams are so refreshing and a blessing to my heart. I consider them a gift from God and I am thankful for them. I’ve been deaf for a solid five years now but I will never lose my love for music.

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!

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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!