Category Archives: Deafness

Cochlear implant, Deafness, Domestic Engineer, Family, Friends

Thursday Thoughts On “Normally” and Group Gatherings

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This week I had planned for things to return to “normal”, or a feeling of it at least. I’ll tell you how the week went and you can be the judge:

1) “Normally” I walk the kids to the bus stop. This week it was far too cold to make them walk, so Dad drove them on all but one day. (Walking through the snow really works those leg muscles!)

2) I “normally” eat breakfast, drink my coffee, and work on household chores after returning from the bus stop. This week I took a lot of back-to-bed “naps”, stretching my coffee and meals far into the afternoons.

3) I “normally” Skype with my mom every day. I was lucky to get in one conversation with her today (it was her birthday, so of course).

4) I “normally” have meals planned and grocery lists prepared for my husband every week. This week I had to throw it together at the last minute.

5) I “normally” feel like writing things that people want to read. Something about watching this puppy for “potty cues” keeps me on edge, and I haven’t felt any inspiration to write. I did write one paragraph for my book though. Actually, two, but the second one is only three words so it probably doesn’t count.

Oh, but tomorrow. I have a gang of girlfriends coming over to eat dinner and knit and crochet, and chat up a storm – though I know that won’t be like old times because I can only follow one person talking at a time. I’m excited to see everyone and am thrilled to be able to open up my home for this event. Even if I can’t follow all the conversations, it will be great to see everyone having a good time. Group gatherings are an area that I immediately started avoiding when I lost my hearing, so it has taken quite a bit of courage for me to step back into these situations. The fact that it’s in my home certainly helps, but also these are dear friends of mine who I know are sympathetic to my new challenges. I have wonderful friends.

So Friday night should be some good times. Saturday we have a belated family Christmas gathering, and Sunday I may possibly have a date with my husband. Then the kids have a couple full days and a half day off from school the next week. All that to say, “normally” is out the window. Forget normal, let’s just have fun!

Deafness, God speaks, Multiple Sclerosis

Wasting away

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So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:17-18 ESV)

Don’t I know it? I am 36 years young, yet daily I struggle with aches and pains and fatigue and several other issues more commonly associated with aging. I have my Kindle set with larger, high contrast fonts, and in my kitchen I have a special phone that offers live captioning for all my calls. I don’t use a walking cane on a regular basis, but that reality is not far off.

This is why I cling to such promises. This life here, this failing body of mine, is temporary. What really lasts, and what really matters, is what’s going on inside my heart. As of this moment, this heart is strong. Resilient, full of hope. I believe much of that strength is a result of the trials I have been through. So rather than wallow in regret or sadness, I choose today to smile and thank God for carrying me through. May I forever remain in the palm of his hand.

Deafness, Holidailies 2014, Holidays, Multiple Sclerosis

Holidailies 2014

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I’m a day late for this blog project (as I was with the thankfulness challenge, but I figure a day late is better than never, and who’s counting anyway?). I heard about Holidailies from a fellow WordPress blogger, Wendi over at Sudden Silence. I thought it sounded like a fun way to be “held accountable” to writing. Holidailies is basically a portal for blog entries written on mostly daily basis from December 1 to January 1. The posts don’t have to be about the holidays, though chances are most of them will be. Given the obsessiveness our society has evolved into having with these winter-time holidays.

That sounded like a segue into a rant about Christmas commercialism. I assure you, it was not. I’m not much of a ranter when it comes to blogging.

Oh! I almost forgot. I’m supposed to introduce myself for those who are new here. There is some info on my About page, but I’ll elaborate. I am 36, and I have multiple sclerosis. I was diagnosed in 2009 while I was pregnant with my daughter. It causes problems, which I talk about here some, but you’ll see that in no way does MS have me. II lost my hearing in the matter of one short week in August 2013 due to autoimmune inner ear disease, but I have since been implanted with a cochlear implant in my right ear. MS struck hard in September 2013 and took some of my vision. So being deaf, visually impaired, and easily fatigued from the MS all adds up to an unemployable me. Which gives me plenty of time to write, something I have always loved to do.

I do welcome your comments here on my blog, whether it’s to ask me a question or just to say hi. Welcome, welcome, and I hope you are having a wonderful holiday season!!

~Mindy

Cochlear implant, Deafness, Dreams, Family, Holidays, Miracles do happen

The most thankful post yet

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This morning I had a wonderful, realistic dream that our family was sitting around waiting for Thanksgiving dinner. Mike’s aunt and grandparents were there, and we were trying on hats, comparing head sizes. We were just talking and having a good time. Like the old days when I was a hearing person. In reality, that was only a short time ago. I lost my hearing quickly, but almost as quickly I was given the gift of a cochlear implant. I remember the fear of complete silence, and I still experience that in bits and pieces (bedtimes, showers, etc.). So while it will never quite be the same, dreams like I had today remind me that it’s possible. It is on the horizon.

Almost literally.

My husband’s family, my adopted family, will be here tomorrow for the food-filled holiday of Thanksgiving. My dream – or memory, perhaps – will become a reality. Laughing together, sharing stories, making new and wonderful memories. Redeeming last year’s Thanksgiving when I ran crying from the dinner table. Last year was the first year in over a decade that we had not hosted turkey day, and I am proud and nervous to be reclaiming that tradition after such a challenging year. We have always felt blessed around this time of year, but this year I think more than most. Last year I was such a mess, but over time God has picked me up and held me, and given me peace and patience and hope. When I had nothing to give, and barely the strength to ask for help, He rescued me. He rescued all of us.

“Amazing grace, how sweet the sound, that saved a wretch like me. I once was lost, but now am found;was blind but now I see.”

Cochlear implant, Deafness, Miracles do happen

Today was a good day

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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!

Cochlear implant, Deafness

Feeling Normal

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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!

Cochlear implant, Deafness, Motherhood

Bilaterally Bionic

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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.

Books, Deafness, God speaks

On healing and cardboard boxes

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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.

Deafness, Kids

New challenges

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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.