Tag Archives: Being deaf

Feeling Normal

Today I got to meet some very special friends. Tara is the wife of a man my husband met playing video games with online, and their two sons play Minecraft with my son as well. I had met the husband and his oldest son in person, but had only chatted online with Tara. It’s hard to tell with online communications, but we seemed to get along pretty well. As it turns out, we get along pretty well in person too!

But here’s the thing: Tara is blind, and has been since birth. She was born without optic nerves. None. So for her, though she has challenges not common to most, she is used to it. Her husband and sons are used to it. Even her friends are used to it. They are no strangers to disability, and they all seem to know what she needs. Or at least aren’t too shy to ask if they don’t.

The strange thing is that as we were driving home, I was almost in tears, and I couldn’t figure out why. But after being home for awhile and journaling some, it hit me. I spent two full hours in a noisy indoor pool and recreation center, with dozens of strangers, but yet I felt peace throughout all of it. Why? Because no one was fussing over me, or treating me differently, or looking at me with sad, pity filled eyes. Sure, some asked questions about my recent health setbacks, and how my CI was working for me, but it was just conversation. They wanted to get to know me, and that was all.

Do you know how refreshing that is? To feel like just one of the other parents? Not singled out for being disabled, yet still respected for my particular challenges (meaning no one tried talking to me from behind or across the room)? Let me tell you, it’s a wonderful feeling, and I am wishing I could hold on to that feeling for as long as I can. I don’t know how well that will work, so if I lose it we’ll just have to go down and visit Tara and her friends again!

Productive days and support groups

Occasionally I have days where I feel like I totally kicked ass. Yesterday was one of those. At 10:51 *AM* I was Skyping my mom to brag about all the stuff I had already accomplished: read my daily Scripture, wrote the meal plan and grocery list for the week, cleaned toilets, bathroom sinks and mirrors, walked for ten minutes on the treadmill, updated my Cozi calendar with the kids’ school calendar, and I showered.

So when my husband dropped my daughter off after noon (half days all week, to ease the kindergartners into school, I suppose), I was ready. Of course, we only had an hour or so to relax because the rest of the day was a blur. I had a follow up appointment with my neuro-ophthalmologist in the afternoon, then we picked up our son from Grandpa’s house, then came home to quickly eat dinner, then Mike and the kids dropped me off at my HLAA (Hearing Loss Association of America) meeting while they went grocery shopping.

Neuro-op visit went well. They tested my eyes again, and found that my right eye is a little worse, but my left eye is a little better. I guess that means I’m even. They used the word “stable” which is much better than “going blind”, so I’ll take it. I don’t know why going blind scares me so much. I know people who are blind, some from birth, and they are otherwise healthy and happy. It certainly wouldn’t be the end of the world. It would only be the end of my world, if I let it be. But we’ll cross that bridge when we get to it. IF we get to it. At this point I guess it doesn’t look like I’m headed there anytime soon. Thank you, Jesus 🙂

The HLAA meeting was wonderful. It’s the start of a new fiscal year for them (the local chapter, at least), so they kicked it off with an “open mic” night. I was excited to go, because I went to the last meeting in June, and to a dinner with the group in July, and already I feel like we are family. Last night was our opportunity to share our hearing loss stories with each other. It was refreshing to hear about other’s journeys, and was nice to be able to share mine as well. It’s amazing how different we all are, in general and in how we came to be deaf or hard of hearing, and yet we have a common understanding and can easily relate to one another. The group ranges in age and background. Some are lipreaders, some know ASL, some have hearing aids, and some have cochlear implants (some even have both!). Some have been deaf since birth, yet some, like me, have only been deaf a short time. Yet when I say being deaf sometimes makes me feel isolated, they all nod their heads in agreement. Because they have been there too.

All in all, it was a good day. Today I was reminded of where I have been, what I have come through, and the amazing gifts I have been given. Hallelujah.

Finding music

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!

First Impressions

Today was the day my first cochlear implant was activated. I wasn’t sure how it would go, but I went in with an open mind, and I’m glad I did. Here are some of my first impressions:

1) Everyone sounds like chipmunks. So when they turned it on and started talking to me, I sat there, grinning like an idiot, trying not to giggle (I failed).

2) Natalie told me she loved me, and I told her I loved her too, and then I started to cry. This is what I was waiting for. I think a lot of times she speaks without sound when she talks to me, and in a very exaggerated way, so it’s going to take some learning on her part to remember to talk normally again. But thankfully, she is a smart girl and a very quick learner. I think as weird as it was for her when I went deaf, this is also a new kind of weird. So we’ll journey this weirdness together.

3) When they were setting the base volume level, they played a series of beeps. I had dried my tears from before, and this just got them going again. It’s been 11 months of having nothing sound real or normal, and those beeps, those sounds, they were beautiful. Beautifully real sounds.

4) On the drive home I could hear the beats to the music, and the road noise from the tires, and I just stared out the window. And again let the tears fall. I was struck with the simplicity and normalcy of sound. I believe I really had forgotten what I had lost. The memory of it, and then the reality of it being returned to me was just overwhelming. Simple sounds we all take for granted. The shuffling of papers, footsteps around me, my own husband’s voice. These are all things I took for granted, and they were taken from me. Yet for some reason only known to God, they are being returned to me. To say that I am grateful is a colossal understatement.

These past 11 months have been a journey, and today is the next step on that journey. I thought at first that it was a new journey, but I think that’s wrong. What I have been through has shaped me in ways I am still discovering, and it has made me who I am today. I am more patient, more courageous, more thoughtful of others. Stronger, yet tender-hearted.

Yet, still Mindy.