Category Archives: Deafness

How my phone is like me

I use my phone every day, all day. It has tons of useful features to support my life. It helps me keep myself and my family on track. Lately I had a thought I wanted to share. My phone is like a metaphor for my life. Let me explain why.

I was canoeing a couple years ago and the canoe tipped over. My phone was in a Ziploc bag, in my running belt, and water leaked into the bag, damaging my phone. I was able to soak it in a bag of rice for awhile, which restored most of its functions, but the one thing I can’t do is use the back button and that other one on the bottom left (the one that shows you all your open apps).

However, I found a workaround by using the s-pen to use those two buttons. The phone responds to the s-pen, just not my finger. A couple weeks ago I was replacing the pen into the phone and it snapped on me. It still works the way the pen should, it just doesn’t have that spring action needed to get it back out of its slot. So now if I want to use my back button, I need to bang the end of the phone on the heel of my hand in order to get the s-pen out. Other than that, the phone works great! It’s kind of ridiculous and it makes me chuckle.

It looks like a completely normal, functional phone. It just has a few broken features but there are workarounds. And that is a metaphor for my life. I am deaf but I have cochlear implants to help me hear. I am visually impaired but have friends, family, and public transportation to help me get around. I look completely normal, I just have a few broken pieces and I have my workarounds I’ve discovered I can use in order to continue functioning. So there. That is how my phone is like me.

Advertisements

Coffee talk

I was at the neighborhood coffee shop today and had a pleasant conversation with the barista. She remembered me (and my drink, a mocha with hazelnut and almond milk!) from the last time I was in there with a friend of mine. She had wanted to ask me about my cochlear implants, and hoped I didn’t mind. Her son has partial hearing loss in one ear, and she’s been encouraging him to get a hearing aid, but he doesn’t feel he needs one. That and he’s a high school student and probably fears the ridicule he might receive from other students. This is a shame, because there is absolutely nothing to be embarrassed about.

I wear my cochlear implants proudly, and have never felt self conscious wearing them. The barista, Dana, was nervous to ask me about them, but I told her I love it when people ask. In fact, I wish more people would. I know people must be curious. I know I would be. They are fascinating in the way they work, and not a lot of people really know much about them.

Dana was under the assumption that my hearing with implants would be much better than normal hearing, but I informed her that was not the case. Not to minimize the miracle of the invention, but scientists just cannot outshine God’s invention of the human ear. What I hear is clear, yes, but it has a different quality to it. No, it will never be the same as normal hearing, but having the gift of conversation back after losing it so quickly more than makes up for that disparity.

Dana also found it especially fascinating that what I hear now does not come at all from my ears, but from the microphones built within the earpieces. It’s true, my ears are now just placeholders for my glasses and my cochlear processors. You know when you clean your ears out with a Qtip and it makes that funny noise? Yeah, I don’t hear that anymore. Kinda funny, I suppose.

Anyway, it was good to chat with a friendly stranger about how well the cochlear implants are working for me, and to have someone share in the excitement. I will never take my hearing for granted, ever. I am super grateful for what I have. ‘Nuff said.

“A man was bragging about his new hearing aid and how great it was and how well he could hear with it. His friend asked what kind it was and the man responded, 12:30.”

Frustration

I’m frustrated today. Frustrated and grumpy. It’s not anything specific, really. Just more of a general feeling. I was trying to crochet but it’s a challenging basket weave pattern and I just didn’t feel like messing with it anymore. This frustration makes me very unpleasant to be around because I’m a major grump. So I’m upstairs with a beer and a laptop, and I’m hashing it out on the keyboard. I was working on my book for awhile, with my cochlear implant volumes turned way down, and my son came into the room and scared the living daylights out of me. I didn’t hear him come in!! It’s a good thing I wasn’t holding my beer at the time. I was at a stuck point with the book anyway so the distraction was nice. He read some parts of the book and then we got to talking about what he remembered from when I first lost my hearing. It’s always interesting to hear it from my kids’ perspectives.

I think what I’ve learned today, or was reminded of, is that writing calms me. That frustrated feeling has almost completely left me, and I don’t feel like such a grump anymore. And I appreciate that you are willing to read all the silly things I write. So thank you, reader. From the bottom of my heart, thank you.

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?

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?