Category Archives: Deafness

Today was a good day

I feel like someone should throw me a party, or buy me a congratulatory latte. I did get a high five from my audiologist and a fist bump from my husband. Why? Because at my last appointment I scored 21% speech recognition and today it was a whopping 79%! And that’s after only four months with one ear! Imagine how much better it will get with time and possibly a second ear implanted!

This is so exciting, to put a quantitative figure on the improvement until today I had only speculated was happening. Praise God!

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!

Bilaterally Bionic

I am a late-deafened adult, and when I lost my hearing it happened very quickly (within a week of the onset of tinnitus). I now have a CI in my right ear, activated last June, and it is *wonderful*. I am so excited to be having conversations again with my family and friends!

People keep asking if I’ll get one in the left ear as well, and up until a few days ago, I always replied with an emphatic YES. However, I started having serious doubts. When I take off the processor to sleep, shower, change my clothes, or do my hair, I am more aware of the things I AM still able to hear with my left ear. It’s not much, but it’s not complete silence. I can hear loud noises, such as a phone ringing or my daughter screaming at her brother or sometimes even a knock at the door. And though it’s not even close to normal hearing, and I wouldn’t be able to understand speech, it’s still something. And going bilateral would mean, well, silence. Completely. And I don’t know… do I want that? Is that a reasonable price to pay in order to have two good, working, bionic ears?

Knowing there are many people on the Advanced Bionics forum who have gone bilateral, and perhaps also wrestled with these same questions, I posted my concerns and asked for some perspective. I was astounded at the number of responses I received. All held great perspective and food for thought, however one in particular struck a nerve I hadn’t realized was exposed.

PaulW writes:

Mindy,
I wonder if the real issue isn’t fear.
I see that you are a mum. And I know mums are supposed to be perfect caregivers, protectors and comforters. How can you do that if you are deaf? But hubby can hear – right? And there are two children who can learn to look out for each other – even during the night. Teach them what smoke detectors sound like and what to do – i.e. wake you. Teach them not to open the door to strangers and to come and get you. Teach them that if either is sick to come and wake you. I do think that everyone can learn to look after each other and be a secure, strong and safe family. It’s not all on your shoulders! And if truth be told, what can you hear? You might be doing your family a much bigger favor by improving your own hearing and ability to share their happiness, experiences and socialize. That might be your biggest mum gift to them and yourself!

He is right, the issue is not fear. What is the issue? I think it is that I allow myself to have unrealistic expectations of myself. While it may have been realistic two years ago to be able to hear a smoke alarm or whether a kid is crying at night, it is no longer. I am deaf now. Expectations change. My husband knows this, and he certainly doesn’t expect me to hear those things at night, so I shouldn’t either.

But with a change in expectations, we can go one step further and prepare the family so everyone knows what to do in certain situations. The thing is, this is not just for our family. Every family should have fire escape plans. And every child should know who they can come to when they are sick or frightened in the middle of the night. These are things that every family should discuss.

So, back to the burning question of getting a second CI. I still have some hesitation, but if I’m honest with myself, I would say that my left ear is pretty damn useless. I think that I am starting to accept that fact, and am willing to sacrifice that residual hearing in order to gain better hearing by going bilateral. I’m told by many that two is so much better than one. One person said it’s exponentially better, like 1 + 1 = 3. And if I can have better hearing during my waking hours and while I’m with people, being in complete silence all the other times is worth the cost.

On healing and cardboard boxes

I have been reading a wonderful book written by Joni Eareckson-Tada called “A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God’s Sovereignty”. If you haven’t heard of Joni, I’ll give a brief background. She is an accomplished author and advocate for the disabled. She  sings and paints and hosts a radio show. What is so remarkable about this is that she was in a diving accident in 1967, at the age of 17, and has been a quadriplegic ever since. Her entire adult existence spent in a wheelchair, completely dependent on others. And yet she lives and breathes and inspires others to do the same (you know, to live).

Joni talks about the issue of divine healing. I know God can heal, and I have prayed countless times for it. Yet physical healing hasn’t happened for me. And some Christians will try to say if you’re not healed it’s because of a secret sin, or lack of faith. I’m here to declare that’s horse dookie. God will heal me, in His time.

Besides, if He isn’t healing me now, I trust that it is for a purpose. What that is exactly, I can only speculate. In fact, I believe God shared some of it with me today, through Joni’s book. She was describing the great analogy of the treasures in jars of clay, or in modern terms, gifts in a cardboard box. The box is just what holds the gift. It does not need to be fancy or even well-made. In fact, the more beat up the box looks, the more the gift inside will stand out. Do you see? Light shining through the dark, a gift glowing out of a cardboard box. The plainer the packaging, the brighter the light shines.

So I can understand why God has allowed my ears and eyes to fail. My disability brought me home, and gave me the gift of time. Time to give to my family and friends and ultimately, to God. That gift of time is the shining light in the darkness of hearing and vision loss. If the latter were the means to that end, I am thankful for all of it.

New challenges

So this week I have a new challenge ahead of me. It shouldn’t be a big deal, but it kind of is.

My husband is going out of town for work. For three whole days. And the kids need to go to school, which starts at a precise time every single time. They ride the bus, which is on a schedule. Since I can no longer hear an alarm clock, my husband has served as my alarm clock the past year. And I don’t have one of those alarms that shake the bed. So I must rely on my oldest child.

Now, fortunately he is a very early riser, usually up and ready well before we are. So it will probably be fine. But we have set an alarm clock in his room just in case, and he has been instructed to wake me up as soon as he wakes up, whether it is when the alarm clock goes off or before. If he wakes me up at 5 am I’ll be regretting telling him that, but at least we won’t miss the bus.

I’ve been making sure they are ready for school for the past two weeks, so that part shouldn’t be a problem. We’ve gotten into a good routine and they are surprisingly self-sufficient. Luke, at 7, pretty much takes care of everything on his own. He’s a morning person and he loves school, so no prodding necessary. Natalie, my four year old, on the other hand, needs a little coaxing in the wee hours of the morning. But once she gets going, she does pretty well all on her own.

So. I’m nervous, a smidge, but really kind of excited to be given this enormous responsibility, and even more stoked that I am physically able to do it.

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.

Phone training

I am super excited! Kids started school today, and my head is swirling with ideas and plans for how to best use all this time to myself. Cleaning and meal planning is a given, but I have other stuff I want to get done. First and foremost, I want to practice listening with my cochlear implant. Which will be much easier now that I don’t have other sounds around to distract.

I really want to get to a point with the phone where I am confident (i.e. not afraid) to answer the phone when it rings. The first step was reviewing the instructions for my ComPilot remote, which pairs with my implant via Bluetooth. Easy peasy, right? Well, I didn’t realize that I can actually answer the phone with the remote. Should be super easy, as long as I have the remote with me, and turned on. So I have that new knowledge in my back pocket (along with my phone… hehe) and will practice listening in preparation. I did some reading on the Advanced Bionic (AB) forum at hearingjourney.com, and found that there are programs out there, provided by the cochlear implant manufacturers, to assist us ci recipients with learning to use the phone. So Cochlear has an actual phone line dedicated for this purpose. You call the number, choose the option, and listen. They even have a pdf for each day’s recording, so you can read along. See?

http://hope.cochlearamericas.com/telephone-training-aug31-sept6

So if I can do this every day, over time my brain will learn to recognize speech. And from here, things can only get better! (Ain’t that right, Howard?)