All posts by Little M.S. Runner

Forty-something, married with two kids and two dogs. Trying hard to live every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ.
Cochlear implant, Music

Finding music

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I cleaned out three purses today. Yes, three. And that is just scratching the surface. I won’t even tell you how many purses I have hanging in the closet.

Anyhoo, It felt good to clean them out, and even better to have found my old ipod. The one with all of my favorite music on it that I somehow lost two computers ago. Maybe. Well, I was able to pull up all the songs on my laptop so I can listen to it through my CI remote (The Phonak Compilot) IF it successfully connects. Which most of the time it does not. But maybe I just need to restart. The additional good thing about this is that I was able to upload many of the songs from my laptop to my Amazon cloud drive thingamajigger, and from there I can listen from (and possibly download to) my Kindle. Which almost always connects to the ComPilot. Yee. F-in. Ha.

And now I can start to listen to the songs I know and “practice” hearing music again. And hopefully enjoying it too. I know it’s possible because other CI users say it is, and I have had blips of musical enjoyment here and there. Like yesterday in the truck when Beastie Boys’ “Pass the mic” came on the radio. That was super fun and brought back lots of great awful memories of my young adulthood. I listened to Beck’s “Loser” just now and that was pretty fun. Crazy stupid lyrics that I will probably never forget. So here’s to future CI joy and music enjoyment.

Get crazy with the Cheez Whiz!

Food, Kids

Bad Idea

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Natalie likes to help me. With just about everything. She often helps me make coffee in the morning, and today was no different. Only I had set it up the night before with the timer, so there really wasn’t much to do. So she picked out my coffee mug for me and brought the half & half out of the fridge. Both were waiting for me on the counter, next to the pot of freshly brewed coffee. I so love this girl. And just when I think she “gets” me, she says things like this: “You should sometimes not drink coffee.” When asked for clarification, she said (with an air of astounding gravity) “just skip a day of drinking coffee”.

Uh…. NO.

God speaks, Vacation

Abbey Trip 2014

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I have just returned from my annual trip with my sister to an Episcopalian monastery. This was our 4th trip together, but I started going there more than a decade ago, and I’ve lost count how many times I’ve been. It’s truly a time of rest and renewal for us. I did some journaling, but not as much as I would have liked. And since I didn’t bring my laptop, I just wrote it down. No filter, no edits. So what follows here is exactly what I wrote. Reading my writing on a white piece of paper is physically exhausting for me to do, so pardon me if I don’t feel like reading through again and “perfecting” it. Whether it sounds good or not, it’s all true.

Friday:

We made it to the Abbey. I’m teetering on the brink of a flood of tears. Mixed metaphors, I know. I just have all this sadness built up. I think that’s why I keep getting so frustrated, and Mike keeps asking me what is wrong. I always say it’s nothing, but that’s a colossal lie. I am sad and scared. Not angry, because I don’t know who to be angry at. Just really scared for my future, and sad for what I am missing, like pictures Natalie draws for me. And not being able to really see my surroundings. That frustrates me – constantly. If it were all gone, if I couldn’t see any of it, maybe the frustration wouldn’t be there. Because I wouldn’t be subconsciously trying to see it all. Maybe. Not that I’m wishing for that. That is maybe what scares me the most. Losing my eyesight completely. Losing the ability to see my family’s faces and watch my kids grow.

Well, I let the tears fall, and it didn’t end in a sob-fest. I’m sure there are more to come, but for now I feel like I can breathe again. This is good, writing. I didn’t bring the laptop so this is all I’ve got. It’s slower, and harder to read, but I guess that’s good as it allows me time to let my thoughts come through. Clearly.

I need to eat.

We went to Vespers and Mass already. Had lunch, went to buy chicken and steak. Not in that order. I took a nap too. I can’t believe I forgot the steak! This weekend seems cursed. There was a huge accident on the way here that prevented us from getting onto I-94 – cranes had to be used to move the semi trucks. But we are taking the curse in stride. This past year has dealt us both a shitty hand, but we are determined to make the best of it, despite the obstacles.

Just like this weekend.

10 pm: Heading to bed! Will be up at 3:30 am for the 4 am Matins service. Good day 🙂

Saturday:

Was up at 3:30 am for Matins (thanks to 3 cups of coffee the night before, I woke up all on my own. Slept from 10 pm to 12:30 am, and then every hour after that. Not too bad. Then went back to sleep after Matins, and woke up to the smell of bacon (for the quiche), just in time for 8:15 Mass. And yes, they do communion on Saturday.

I’m not sure what to do with myself at this point. I want to make the best of this time, but I want to get rest and relax too.

Next weekend we go camping with the church. I’ll definitely have to make grocery lists and catch up on laundry before then. I’ll wait to do that when I get back home. Because Mike likely would have bought some food. And what fun is coming to the Abbey to make grocery lists?

Now – coffee. Read.

It’s our last night, and after finally beating Kari (just barely) at Spite and Malice, we are heading to bed at 10:50 pm. Tomorrow is Sunday, so Matins isn’t until 5:30 am. Kind of like sleeping in.

Today was a humid day, and my hair shows it. Do you ever catch a glimpse of yourself in the mirror and gasp? That just happened here. Think Gene Wilder and that comes pretty close. Compounding the issue is all the short wispy hairs I have from the regrowth of the hair I lost when I was on steroids last year.

Ah, I forgot to mention we went to tea time to mingle with the monks. Prior Aelred greeted me first with a big hug and said “can you hear me now?” I love his sense of humor and compassion. He has been following my updates on Facebook and has given me lots of encouragement along the way. It’s always good to see him.

I miss Mike. It’s been a good trip, but I’ll be glad to be home. Of course, I miss the kids too. It will be so great to see them again too.

God speaks, Kids, Multiple Sclerosis

Morning snippet

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Psalm 38:15 “But for you, O Lord, do I wait; it is you, O Lord my God, who will answer.”

Oh boy, do I wait.

I hate waiting, but yet I also hate to be rushed. I suppose I should give God the same courtesy I would want. I won’t try to rush Him. He will heal my eyes, in His own perfect time.

Until then, I must relish the good and take joy in what I have now. I am loving spending time with my kids this summer. We have taken walks together, played at the playground, gone camping, ate ice cream, built forts, danced around the living room. They return to school in a little over a week, and things will change all over again. I’m not sure I’m ready, but it’s okay because we take things one day at a time around here. And anything that can be done in a day can’t be that overwhelming, right?

 

 

God speaks

The Bible is so old

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As I ponder my condition and worry if or when I will ever regain my vision, I am continually reminded of the truth. God whispers in my ear and reassures me that this life on earth is so short compared to the eternity I will spend with Him. And those will be the days when I will see with fully functioning eyes and I will never again grow weary.

Just this morning, and again this afternoon, God has shown me simple scriptures to remind me of this. There are so many. And they are all so old. Think of how many people have read these words over the decades, centuries even, and have struggled with illness and pain, loss of hearing and vision, and were continually comforted by these words. I am not the first to struggle, and I certainly won’t be the last. But, I can rest assured in the knowledge that God has been down this road before, countless times, and He’s got my back.

Dreams, Family, Vacation

Camping

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Had a lovely time camping with the kids this week. I took a nap as soon as we got home. Sleep was interrupted by a nightmare that seemed like it came out of an episode of Criminal Minds (which I haven’t watched in well over a year). Oh well. I woke up to dinner with the family. I have laundry going and now I’m just trying to catch up on paperwork and junk while Grandpa feeds my kids ice cream. Between the ice cream and camping gunk, they will be bathing tonight!

**INTERMISSION**

And now the kids are bathed and in bed. Time for me to rest. Not doing laundry. Not working on a grocery list or planning my weekly chores. I still desperately need to bathe as well, but first I’m parked on the couch with a heating pad, warming my aching, arthritic lower back. Cuz I don’t have enough issues with the hearing and vision loss.

Ah, but life is good. I am blessed with a wonderful family. And it is so good to be home.

Kids

Screen Time Struggle

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Do you struggle with kids and excessive screen time? I do, and it drives me crazy. I fear Minecraft may have taken over my son’s brain. I grew up playing a lot of Atari and Nintendo, and yet I feel like I turned out okay. Today though, I fear that kids spend even more time in front of computers and televisions, and we don’t know how that will affect their development. I try so hard to limit my son’s screen time, but some days it is such a battle. It’s exhausting, fighting that battle (it doesn’t help that we are so much alike). However, I do think it is a battle worth fighting. And this article helps to confirm that theory. Next time Luke objects to turning off the game, I’ll just tell him to read the article! 😉

Do Screen Time Limits Really Matter?

Cochlear implant, Deafness

Phone Talker

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I have never been one of those people who enjoys talking on the phone, so it didn’t bother me so much when I went deaf. However, talking on the phone is extremely convenient and useful (as opposed to texting and emailing).

One of my fellow CI friends recently asked how I was doing at talking on the phone. I regrettably responded that I hadn’t tried yet. The fear of failure and frustration was just too great. Well, then I had some major trouble communicating with my mother-in-law on Sunday as she was trying to return my children. I decided then that I would bite the bullet and give it a shot.

Feeling self-conscious, I was only willing to try a phone conversation with someone who really understands how I hear (and how I don’t), so my husband, Mike, was the lucky guy. I called him yesterday at work. From my phone! Imagine that! He speaks clearly and slowly, and I think I understood most of what he said. The call went surprisingly well, and it gave me the courage to try it with a friend. She had been with me during the trouble with my mother-in-law, and she knew how nervous I was. We had a successful conversation, but I know I missed some things she said because we are both chatty people and ended up interrupting each other with giggles and random interjections! However, it still left me feeling pretty good about the future of my hearing and the progress to come.

Today I even Skyped with my mom, and this time she didn’t have to type her words to me. She could just talk to me. It was so wonderful. I am so grateful for this implant. I feel like so much was stolen from me last year, and the ci has given much of it back. I’m at a loss for words now. Hallelujah.

Cochlear implant, Deafness

CI Education

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I am finding that as I am learning to hear with my new cochlear implant (CI), I also need to teach others how to talk to me. Because as the audiologist reminds me, I am the only one who knows how I hear things, and therefore I am the one who must educate others. Deaf people with CIs may have similarities in how they hear, but will likely experience it very differently from one another. So, even if someone knows someone else with a CI and thinks they know, they need to be open to learning how each person hears. If they want to be heard, of course.

So, hear are the main things I tell people:

  1. Speak at a normal volume. I’ll tell you if it’s not loud enough, or just turn up the volume on my earpiece.
  2. Clearly enunciate your words as close to naturally as possible (unless you’re my family from Georgia, then just talk like a Yankee, for Pete’s sake).
  3. Make sure I can see your lips moving, and if you must turn your head, stop talking before you do.
  4. Surrounding noises, if loud enough, will drown out your voice. If it’s constant background noise, I may not be aware of it, so let me know it’s present and suggest to move to a quieter spot.
  5. Sudden loud noises, like a door slamming or a car alarm going off, will completely take over, and essentially interrupt what you are saying. If that happens, I will likely just ask you to repeat whatever you just said.

Above all, be patient. And please, don’t ever throw up your hands and say “never mind”. Just like any hearing person, deaf people want to communicate with others. I was deafened late in life. I did not grow up learning and communicating with others through sign language. Speaking verbally with others is all I know, and it’s extremely important to me. I, like so many others, took a leap of faith to have a computer permanently implanted into my skull. So you can bet with 100% certainty that CI users CARE about hearing what you have to say. I know I do!