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.
Friends, God speaks, Miracles do happen

Let me introduce you to a friend of mine

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I started this post last night, but it was while I had the television on, so I was distracted. I scrapped it, because when you want to share an important message, “distracted” is a crappy mindset to be in. This morning I’m trying to go with “honest” and “clear minded”. Here goes…

I saw Jesus yesterday. Not literally, of course, but real enough. I hesitate to write publicly about this because I want to be respectful of others’ privacy and personal lives, but I hope she will understand the underlying desire to share the powerful message her life is speaking. Who is she? She is a dear friend from my church. Someone who I felt a connection to from the beginning, because when we met two short years ago, she was having difficulty walking, as I do many days. It looked like MS, though doctors were still working on a diagnosis at the time. After many months of waiting for more testing to be done, a diagnosis was made.

My friend has ALS. Also known as Lou Gehrig’s Disease, ALS is a debilitating, incurable, fatal neurological disease. The nerves that tell her body to do the most basic and necessary functions are quickly dying. In a very short amount of time she has had to deal with loss after loss after loss. She is dependent on her husband and countless others for everything: eating, bathing, dressing, sleeping. Not only that, but she is an extrovert. Being stuck at home has to be one of the hardest changes for her. Amongst all the rest.

But rest assured, there is a positive message here. You see, I never leave her house feeling sorry for her. In fact, I always leave feeling more blessed and amazed. Not because she is a great woman, though she is amazing, but because I see something – someone – shining through her. When I see her, I see Jesus in those sparkling eyes. She is living in one of the most tragic of situations, and she still wears a smile and true light in her eyes. She is confident that this is not the end for her. She is looking forward to an eternity with her Savior. When her physical body breathes it’s last labored breath, she will be in heaven, dancing with her Jesus.

This is a woman who has devoted her life to serving Christ by mentoring others, and she hasn’t let ALS stop her. She continues to mentor others from her wheelchair using the telephone, computer, and voice commands. She still accepts visitors at her home, even though it may be uncomfortable for some to see her in her present state. Her body is dying, but her spirit is still very much alive. Of course, she has her bad days, but she lets herself have them and moves on. Every day is a gift, and she knows this with all of her heart. She chooses to life live to the fullest, every day, with all she’s got. And it may look to the human eye like that’s not much, but I know the opposite is true. She has Jesus living within her, giving her strength and peace and courage and hope. By letting Him shine through her, she is a true inspiration.

My hope here is a sort of “pay it forward” wish. I know that Christ’s strength and power is made perfect in our weakness. It’s true for my friend, and I want it to be true of me. I was dealt a crappy hand this past year, but I am determined to make the best of it. With strength I didn’t know I had, I am overcoming. I am 100% confident that that strength comes from knowing Jesus, and I want everyone to know Him too. So I suppose that’s the message. I’m not an evangelist. I’m not trying to be pushy. After all, you could have stopped reading this at any point, and you still can. But if you’ve made it this far, let me ask you this: have you met Jesus? Do you want to? I know He wants to meet you, and I would be glad to introduce you 🙂

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.

God speaks

City of refuge

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I’ve been reading in the Old Testament. Lately, in the book of Numbers. Have you read it? It’s really just as exciting as it sounds. I pretty much read because it’s part of my reading plan and when I’m done, I can check that off my list of things to do.

Today’s nugget from Numbers chapter 35… If you happen to kill someone by accident, like dropping a stone on them (it’s in there, really), you do not have to die as payment for your transgression. But you do have to move to a city of refuge, and live there until the high priest dies. So, not so bad.

Believe it or not, God actually spoke to me through this passage of Scripture. I have not killed anyone, but I’ve been feeling a lot of guilt lately because I have this temper that seems to ride very close to the surface, and I can’t seem to control it. It strikes before I can tame it, and apologies and explanations don’t fully repair the damage. Nor do they remove the guilt. But the good news is that God is a merciful God, and full of grace. Grace is not something we have to earn. It’s just there. And if we go looking for it we are guaranteed to find it. And it will be like a city of refuge.

Bam. That was all it was. It’s not very complicated, I know, but it hit me hard, so I had to share.

Family, Housekeeping, Kids, Movies

Movie night for the win

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I had a crazy busy day, and now the house is a disaster. Well, a disaster in the same way last week’s thunderstorm was a hurricane. There are still traces from last night’s dinner in the kitchen, floors have attracted various debris from the weather outside, and laundry is, well, always in progress. But I was home alone with the kids tonight, and I didn’t want to spend it cleaning. I wanted to spend it with them. So I did. We snacked and talked and then we snuggled up on the couch and watched Toy Story 2, right up to the very end. I can’t remember the last time we’ve all watched a movie from start to finish with no interruptions, and with no electronics stealing our attention. It was beautiful.

And now they are in bed, well past each of their bedtimes, and I sit. Writing and reading. Not cleaning the house out of some neurotic obsession. I think that’s a good sign, right? That I’m not TOO obsessive? That I can draw a line somewhere, and be realistic about what matters and what doesn’t? After all, (paraphrased from the best movie quote of the night) “I can’t stop [them] from growing up, but I wouldn’t miss it for the world.”

Decluttering, Memories, Music

Hippy Days

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I’ve been de-cluttering lately. Feels good to get rid of things. It’s good preparation for if we ever move to a new house. Which I hope we do, eventually. I finally went through the box of stuff that my former co-workers packed up for me when I lost my hearing and left work. That sounds like they were anxious for me to be gone, but really they were getting ready to move to a new building, so it had to be done. I found a lot of good stuff in there, pictures from when the kids were younger, my ipod and speakers, my notary stamp, even some herbal tea bags.

I’m enjoying a cup of tea right now, of a flavor I had not tried before. I’m sure it was one a coworker gave me to try. Orange spice black tea. It’s actually quite yummy. As soon as the scent hit my nose it brought me back to my hippy days. And not the ones I spent stoned. It was after that, when I first moved to Lansing. I did hippy things (I suppose, not having lived during the true hippy era) like walking around the campus of MSU wearing sandals with fuzzy socks and long skirts, or drinking coffee at Bilbo’s until the wee hours, playing crazy silly songs on the jukebox (Cibo Matto, do you know your chicken?). I used to shop for tapes and CDs at the campus music store (two of which I found recently, but have no way to play, or listen to, really). I had a roommate who introduced me to house plants and egg noodles (the egg noodle craze lasting much longer than the plants, as I have a hard time keeping green things alive). I went to local concerts, camped out on lawns, and danced crazy dances. It was truly a carefree time for me, which I suppose is where the hippy reference fits best.

I also did some pretty stupid things in those days, even after giving up smoking pot and drinking. I used to take off driving and get myself lost, just so I could find my way home again. When I lived downtown I very often walked around alone. On Independence Day I walked half a dozen blocks to sit on a hill to watch the fireworks. Alone. And this was 1997, so I had no cell phone. Then there was the time I considered buying a VW bus from a guy I met at the laundromat, so I took the bus for a test drive, with the stranger dude riding along. Not smart.

Hmm. That train of thought took an unexpected turn. It’s good to remember happy times from the past, but I guess it’s also just as good to recognize some of the stupid things we’ve done, and be thankful we lived through them. God often keeps us safe despite ourselves, doesn’t he?

Domestic Engineer, Food, Motherhood

Winner winner chicken dinner

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It’s about time I brought this up. I wanted to a few days ago, but it just wasn’t enough. But today’s lunch of leftover pot roast and potatoes with yummy gravy, all made into an open-faced sammich of love… well, that just put me over the edge. In fact, I’m a little distracted from writing this, because I’m still focused on devouring it.

Here’s the deal: I am not a great cook. Not terrible, just not great. I can follow a recipe, sort of, and I can pull off a lot of simple dishes. And to match that, I don’t enjoy it.

However, I like to eat good food. Also, food is kind of a necessary thing, and my family looks to me to make sure we have it. If they had it their way, they would eat junk and processed foods all day. But I am not okay with that plan, as my children are still growing, my husband is diabetic, and I have M.S. So healthy eating, kind of a big deal to me.

Where was I going with this? Oh yeah, good food. So the pot roast and potatoes are super delicious. It earned two thumbs up, one from me and one from my husband. I made pancakes and sausage the day before, and the pancakes earned some very enthusiastic thumbs up from everyone. Definitely a winner. Before that, it was penne pasta with marinara sauce and Italian sausage. This one earned thumbs up from the boys, and some thumbs to-the-side from the girls (we are big on thumbs, it’s a very effective rating system). The biggest surprise to me was the parmesan crusted chicken. Super easy, only FOUR ingredients. If I can count the ingredients on my hand, it passes, and four is great because it leaves one digit for rating. And I’ll tell you, the chicken earned thumbs up from all four of us, to my pleasant surprise. In fact, my husband went back for seconds. Of chicken. Which is amazing because he’s always had weird issues with chicken. Something traumatic when he was kid, but I don’t remember the details. Not that you would want to know. But I digress.

I take my weekly meal planning very seriously, and I strive to find healthy meals that the picky eaters will eat. If they eat it, it passes, but if they love it, that’s a real winner in my book. And so I made one. A book. And I’m putting the winners in it. It’s actually a binder, but let’s not be nit-picky. We shall call it The Dinner Winner Book.

Do you have a favorite meal that’s super easy and sorta healthy and picky-eater-approved? Let me know by leaving a comment here on the blog. Maybe I’ll comment too, with links to the winners in my book, just as soon as I finish eating my yummy sammich.

God speaks

Pathetic whiners

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This morning I was reading my daily Scriptures (with my new electronics lap-pad, courtesy of my thoughtful husband), and a story in the book of Numbers gave me pause. It’s in chapter 14, where the Israelites have just seen what they are up against, and are reacting to it. They see these people who are much larger than they are, and they “seemed like grasshoppers” to them. So, seeing this enormous challenge ahead of them, they cried all night, and then “grumbled” to Moses and Aaron, telling them they wished they had died in Egypt or the wilderness.

Stop right here. This sounds so familiar. I have been here. I have felt small and helpless. In the past year I  have faced enormous challenges and have felt like I wanted to go back to the way things were. But the way things were… busting my butt working full time and going to school and neglecting time with family and friends in the process… that was my Egypt. That was a spiritual and emotional wilderness. Why on earth would I want to go back?

Why indeed? The Israelites are asking why, but it’s a different “why”. They are asking why God is bringing them into a new land, only to let them be killed.  They are asking if it wouldn’t be better for them to go back. (Meanwhile I ask, why would God allow me to lose my hearing and vision? Wouldn’t it be better if I was healed and went back to work?) Some of the men  tried to reassure the Israelites that the land was “flowing with milk and honey” and that the  men occupying the land had been stripped of their strength, because God wants to protect them and give them the abundant land. God WANTS to bless them, and therefore he has removed all obstacles, whether the Israelites can see it or not.

When I look back now at the challenges I’ve faced, I see clearly that God went ahead of me and removed the obstacles that would have otherwise stood in my way, and that I am now in a land flowing with milk and honey.  When I read these Old Testament stories, it always amazes me  how forgetful the Israelites were, that they would complain and doubt God after all He delivered them from, but then I realize I do that. In fact, we ALL do that. All these generations later, we are still the same pathetic whiners. And yet God is also still the same: slow to anger, and full of mercy and love. Patient, merciful, loving. Let’s chew on that for awhile, shall we?