LISTEN: Part I

Over the past two years the Lord has placed a different word on my heart each summer that has sort of become a theme for me throughout the year. Some people make New Year’s resolutions—I have a word. My first word was “obey,” hence the name of this very blog. He was calling me to obedience in various aspects of my life.

This past summer I prayed for a new word, and He made it abundantly clear. My word was “LISTEN.”

I confess I was a bit confused when I first understood this was to be my word. LISTEN is a word I often use with my children when I want them to OBEY. But I had a sneaking suspicion it wouldn’t be that simple--that He wasn’t giving me a synonym. But what does it mean? I wondered. And so I knew there was only one place to turn: prayer. I have prayed often, asking God to reveal the meaning of LISTEN in my life. And as always, He answers when we ask. Not always in our time or the way we desire but often in a way more impactful than we ever imagined—always drawing us closer to Him.  

A month or so back, our pastor said in one of his sermons that we need to listen and believe God’s word so that it changes our heart to know God better. I immediately knew this was God’s desire for me. To believe and to know him better. But I couldn’t imagine the events He would orchestrate to bring that definition to fruition in my life.

To LISTEN is to BELIEVE God’s Word so that it changes my heart to know Him better.

To share what it means to LISTEN, without the back-story that is, would be to do a great disservice to the Lord’s work in my life. So I plan to share the story with you in several parts, beginning by re-posting the very first post I ever wrote for this blog. Without my beginning, it would be impossible to appreciate the journey.

I will re-post my first blog entry below, written nearly two years ago. And as you read, I ask dear reader, for your prayers. I will be heading in for another MRI of my brain on April 4th. This MRI matters. There should not be new lesions. This medicine is the best. I know no matter what the MRI says I will praise the Lord, but I pray desperately for no new spots.  As you read about the beginning of the journey, please pray for where the journey has brought me and where it might take me in just a few short weeks. God is good. All the time. I know no matter what He will draw me closer to Him. Ultimately, that is my heart’s greatest desire.

***

WEEK ONE: TO GLORIFY HIM

Originally written: June 2015

2 Corinthians 1:3-11 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ… . But this happened that we might not rely on ourselves but on God… . ”

On Monday morning I sat outside the cabin at Hocking Hills in southwest Ohio where my husband, three young children, and I were vacationing with his family. It was still and quiet like a sanctuary, except for the echo of the birds conversing in the trees. I listened to their quiet song and although the light was as bright as day, it still whispered of dawn—a time of peace, of grace. The Lord had been working on my heart for the past several months, directing me to read so carefully through the Gospel of John, making it so clear that I needed to “clear the stage” as Jimmy Needum’s song so painfully implied. What, He asked, did I love with “all my heart?” What could I not stop thinking of…?  What were my idols?

Surrender cried the Lord…everything.

But I never had. I was deeply afraid. Afraid of suffering, of what complete and total surrender to the Lord might mean. Even my prayers were somewhat guarded: “Teach me, Lord, but don’t let it be too painful.” Or “I give this situation to you, Lord, but here’s how I’d like to make sure it doesn’t play out….”

But anyone who’s read the Gospel of John knows it is all about the Lord’s timing and doing the will of the Father. Doing the will of the Father. John gives us a glimpse into the life of Jesus Christ and he makes it so clear again and again that Jesus came not to fulfill His own desires but those of the Father’s. My heart knew what the Lord wanted, and so did I.  The question: would I be obedient? Would I continue in this journey of sanctification where my faith is not at a standstill but ever moving closer to Him.

On that peaceful Monday morning, I finally submitted. Or gave in. Or gave up.  I lowered my head in prayer and confessed to the Lord: I give it all to you. I surrender, Lord.

And I meant it.

Back it up a few weeks. I’d been experiencing some numbness and tingling in my torso, in my hands and parts of my legs for several weeks.  Nothing major, I thought.  Certainly not normal, of course, but this happened in March too and they said it was only lower back issues from having children. I figured it would go away like the earlier episode but since it didn’t, I’d at least go get it checked out.  Pinched nerve, need to stretch more... .  Nothing major, I kept on saying. That Wednesday, the doctor didn’t think so much in terms of nothing major: “Let’s do three MRIs over the next few days, some blood tests, and we’ll go from there,” he said.

Panic.

I suddenly decided maybe it was time to clear the stage, or in other words, the Lord decided for me. I dropped it all--my meetings, my agenda and parked on my favorite street under the umbrella of a weeping tree while the world cried down in rain and I cried out for mercy. I turned off the van to relish the peace, to tune my heart to the Lord and incline my soul to His Word.

I flipped through my Bible, praying the Lord would answer. My Bible flipped open to John 9. I looked at the heading: “Jesus Heals a Man Born Blind.” Just read it, I thought:

 “As he went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’

‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him…’

And I prayed—again—my brand new mantra: that His will would be done and not my own. If there is any other way, Lord, let it be. But if there is not, I accept your will in my life. 

On Thursday before I pulled my sheets up over me to surrender to the weight of a heavy day, I cried out to God once more. I lay in bed, listening to my newest favorite song from I am They: Here’s My Heart. I listened and prayed and asked for it all to go from my head to heart. I leaned over and reached for my Bible and scratched down with the best handwriting I could muster through all the tingling, “Here’s my heart, Lord. Speak what is true.”

On Friday I received a phone call: “I don’t usually do this over the phone...,” he began.

And I knew. I had already known, I guess. A pinched nerve was just too easy.

My heart sank as I stood alone in my driveway, my car sitting idle next to me with my three children screaming to be let out. Is this really happening??? I thought.

“Yes, I’m 100% sure,” he said. “You have MS.”

Surrender.

It’s hard to know exactly what happened next. I know I begged the younger of my three year old twins to just have some patience as I pulled him from his car seat. I’m sure I knew that was like asking ice cream not to melt or a cop to overlook 25 miles over the speed limit, but I’m sure it spoke to my state of mind at the moment: out of touch. And as I pulled each of my three, sweet babies from the car, my mind reeled with what was happening. Just get them in the house, call Brian, get them to the bathroom, put them down for naps…move your feet, move your hands, you can do this. And of course, I did.

I made each of my phone calls—my husband, my mom, my dad, my sister, my brother, my dearest friends. Give me a little time, Mom, I remember telling her.  I just need to be alone for a minute.  I felt God’s presence even in those first moments, as my two boys yelled from upstairs with the deepest of convictions: “Moooooom!!!! I have to poooooop!” How can you not laugh at that? Through a curtain of tears, I removed Peyton from the toilet after counting to one minute six times in a row: “This is it, Peyton. You need to get back to bed. I’ll count to one minute and then you’re done.” I no more have his pants pulled up and turn around just in time to see Cameron scoot his little bottom onto the seat. For real? I thought, and laughed out loud. Even in the midst of crisis, God has a sense of humor.

Once I got the munchkins back to bed, I feel certain I must have fallen to my knees at the edge of the couch. I remember thinking, Really, God? I surrender on Monday and this is what I get on Friday?? And yet, somehow, I knew it was coming. I knew He’d been preparing me, willing me to Him and I knew I would be okay, that suffering is part of our Christian calling and that this MS was from God. A dear friend of ours had pointed us to 2 Corinthians 1:3-11 when we heard what the diagnosis could potentially be on Wednesday. I turned there in my Bible and read it again. And I prayed, and I thanked Him that I might eventually be a comfort to someone else. I honestly don’t remember what all I prayed, but I do know my heart cried out to the Lord and that He read whatever was there. I’m sure He saw fear, and anger, but that He also saw humility and thankfulness that He would choose me. I know that He held me tightly in those moments and provided a strength and peace that truly does surpass all understanding.

And in those first 24 hours of having MS, I think I talked to more people about Jesus than I’d talked to about Him in my first 31 years. I couldn’t abide the general, broad “God has a plan.” It suddenly became so cliché and just not enough. No, I had to use the name of Jesus. He is the way, the only way, I thought. And I felt the Holy Spirit calling me so clearly to use His name.

I feel in the midst of adversity it’s so easy to generalize and to succumb to society’s version of a self-serving and general God.  A guy up in the clouds who helps only in times of trouble. A genie in a bottle who gives us our heart’s desire. A word to say when people are hurting to make them think it will “all be good” and will “all be okay.” 

No, I screamed in my head! It might not be okay. It might not be all good.  But I will submit to the will of the Father.  The true Father in heaven who is none of those things. Who is the merciful and loving God of a fallen world—of a world that has disease and death and trial and MS. This isn’t about me, I was reminded.  This is about a Jesus who died on the cross so that my sins might be forgiven. “This happened,” I kept being reminded, “so that the works of God might be displayed…”

In me.             

I pause before continuing to type because the tears have welled in my eyes. Not tears of sadness but rather of deep humility because somehow, someway I write to you with a depth of peace that is truly beyond understanding. I know it cannot possibly come from me—I know it is the gift of God. 

Sorrowful, yet always rejoicing

Sorrowful, yet always rejoicing. 

2 Corinthians 6:10

I read this recently in a wonderful book by Angie Smith: I Will Carry You. I pray that it might meet you wherever you are in your walk--whether in sorrow or joy--or in the great medley of both.

Sorrow was beautiful, but her beauty was the beauty of the moonlight shining through the leafy branches of the trees in the wood, and making little pools of silver here and there in the soft green moss below.
When Sorrow sang, her notes were like the low sweet call of the nightingale, and in her eyes was the unexpectant gaze of one who has ceased to look for coming gladness. She could weep in tender sympathy with those who weep, but to rejoice with those who rejoice was unknown to her. 
Joy was beautiful, too, but his was the radiant beauty of the summer morning. His eyes still held the glad laughter of childhood, and his hair had the glint of the sunshine's kiss. When Joy sang his voice soared upward as the lark's, and his step was the step of a conqueror who has never known defeat. He could rejoice with all who rejoice, but to weep with those who weep was unknown to him.
"But we can never be united," said Sorrow wistfully.
"No, never." And Joy's eyes shadowed as he spoke. "My path lies through the sunlit meadows, the sweetest roses bloom for my gathering, and the blackbirds and thrushes await my coming to pour forth their most joyous lays."
"My path," said Sorrow, turning slowly away, "leads through the darkening woods; with moonflowers only shall my hands be filled. Yet the sweetest of all the earth songs--the love song of the night--shall be mine; farewell, Joy, farewell."
Even as she spoke they became conscious of a form standing beside them; dimly seen, but of kingly Presence, and a great and holy awe stole over them as they sank on their knees before Him.
"I see Him as the King of Joy," whispered Sorrow, "for on His head are many crowns, and the nailprints in His hands and feet are the scars of a great victory. Before Him all my sorrow is melting away into deathless love and gladness, and I give myself to Him forever."
"Nay, Sorrow," said Joy softly, "but I see Him as the King of Sorrow, and the crown on His head is a crown of thorns, and the nailprints in His hands and feet are the scars of great agony. I too, give myself to Him forever, for sorrow with Him must be sweeter than any joy I have ever known."
"Then we are one in Him," they cried in gladness, "for none but He could unite Joy and Sorrow."
Hand in hand they passed out into the world to follow Him through storm and sunshine, in the blackness of winter cold and the warmth of summer gladness, as sorrowful yet always rejoicing.

Pink-ish

Charlotte has been on a kick where I will ask her what color something is and she'll tilt her head back, look up at the ceiling and say, "Ummmmmm....I think it's pink-ish."

I love how she adds the "ish" to the end, as though it's not fully pink but rather a sort of pink. I think of my own vocabulary and know she had to have heard it somewhere. I catch myself saying it, too: "I'll meet you there around 5ish." I usually use it when I want to have some wiggle room--when I don't want to set something in stone. 

But it got me to thinking about all the ish-es in my life, particularly in my faith. I have been challenged in my time with the Lord recently not to live out a faith with any kind of hesitancy to it. God clearly tells us in His Word that He wants all of us. Lukewarm faith won't do. 

I read recently that "Our faith is a serious issue with God. He wants us to trust Him, no matter what our situation is, no matter what our portion" (from Calm My Anxious Heart). One of my favorite Scriptures is Hebrews 11:1:

Now faith is being sure of what we hope for and certain of what we do not see.

Sure. 

Certain.

There is nothing kind of-ish about it.

I confess that even when the Lord has blessed me beyond measure, I still have a tendency to worry, to doubt, when something throws a wrench in my plans. So I have been praying for awhile, seeking God's help in this area--that He might help me become a woman of great faith.  

 

Good news!

Good news: Kaden's MRI came back clear!!! Thank you for your continued prayers for this little boy and his family!

As I pray for Kaden every morning and then see God's love and mercy poured out, I am forever in awe of the way He hears us and sees us. There are how many millions of people in the world and still our great God knows every hair on my head! What a BIG God we serve! 

"God has infinite attention to spare for each one of us.  You are as much alone with him as if you were the only being he had ever created." 

C.S. Lewis

Prayers for Kaden

Many of you who have followed my blog for awhile know that my nephew Kaden battled brain cancer this past year (check out the PRAYERS FOR KADEN tab to read back through his journey). By the grace of God, he has been cancer free now for almost 6 months. Every three months he goes back in for a re-check MRI. Tomorrow (Friday) will be his second MRI since he's been out of the hospital.

I ask for your prayers for this sweet boy and his mom and dad. I pray for a clean MRI. I pray that he will never have cancer again and that he will know the love of Jesus in his heart. 

For his parents, I pray for "the peace of God, which transcends all understanding" to fill their hearts and minds!

We remember always to keep our eyes on the Lord, who is the "blessed controller of all things, the king of all kings, the master of all masters" (1 Timothy 6:15).

Paralyzed

What happens when you are a blogger and the gift God has given you is in the words that you write...and then He comes down and touches you in such a MAGNIFICENT and incredible way that you are left absolutely speechless, without words or any comprehension of how to express the overflow of love being poured into you.

Several weeks ago I prayed and begged for the Lord's mercy. I begged for Him to help me BELIEVE better.

I believe, Lord! I cried out. Help my unbelief!

I don't want to be a "wave of the sea, blown and tossed by the wind." I know the one who doubts "should not expect to receive anything from the Lord" (James 1).  I prayed through a chapter in Beth Moore's Praying God's Word on Unbelief. More than ever before the Spirit filled me with a longing so big and so deep to know God better--to see Him, believe Him in every crevice of who I am.

Don't get me wrong--I believe God. I believe the Spirit dwells in me. But I also believe we come to crossroads in our lives where we are either going to stay at a standstill, or we are going to plunge head first into the water, trusting that He will help us swim.

Simply put, I had such a longing to love my God more than I love my selfish self. 

I shared this quote a few months ago, but I feel compelled to share it again here... 

This is how I have felt over the past few weeks--in such AWE of my God and His goodness and love and mercy that my whole body aches with thankfulness. It is a feeling that sits in the very pit of me and shakes me at the core. I know that I could spend all day on my knees giving thanks and that could not even begin to be enough. It is so BIG and so beautiful that I simply cannot put it into words. I have been praying that He will someday soon give me the words and the platform to share this story, the most intricate details of it, but I know and trust this is not yet the time.

So what do you do when you're a blogger and words are your way. God's way...of letting you share His mercy and love and glory with the world. And then there are no words?

You rejoice as  your cup overflows. You let go and let God. 

And you wait upon the Lord in eager anticipation because He will make His glory known far better than I ever could.

 

The Details

The other night we were preparing to turn onto the highway and I had an overwhelming sense that we should not. In a quick second I prayed, “Lord, please do not let us get stuck in a traffic jam.” We were headed somewhere important. Somewhere we needed to be on time.

Not two seconds later, right before the light turned green, the person next to me said, “Don’t get on the highway!” She had been looking at her Facebook and saw people posting about the current back-up.

We were able to get out of the turn lane and take another route to our destination. I can’t say what being a few hours late might have done to the plans that evening.

What I can say is that fifteen years ago I might have considered it sheer luck that she happened to look at her phone just then. I can tell you with certainty I wouldn’t have thought to seek God’s help in my traffic affairs.

But today it was such a good reminder that God is in the details. I’m sure you’ve heard the BIGGER stories—the ones that rock your world when you think What could have been? For example, I remember that my sister was originally scheduled to fly out for her overseas trip in middle school on the TWA Flight 800 that ultimately crashed and killed all on board. At some point the plans got switched and they were forced to fly out of a different airport. Some might call that coincidence. I call it the grace of God.

Undoubtedly that rocked our world at the time. Brought our lives to a pause and made us think, Thank God she wasn’t on that plane! But when the consequences aren’t life and death, we sometimes forget to thank God. Or even to notice Him.

Most importantly, what the other night reminded me of is that God wants the details of our lives. He wants me to be praying continuously and in all circumstances, even the small, minute ones (1 Thess. 5:16-18).

Today I have been tired, and when I’m tired, I can easily have a short fuse. While I’ve worked (and more importantly, prayed) hard to improve on this in my life, it is still an easy trap for me to fall into. Today I’ve gotten angry and yelled at my children in a way that doesn’t honor the Lord. I’ve thrown my hands up, snapped at them and done plenty of other childish things (no mom of the year award around here!). I’ve had to seek forgiveness from two five year olds and a three year old for acting in a way that doesn’t glorify Him. God is in the details today, too.

He wants my details.

Even the operating-on-not-a-lot-of-sleep details.

He knows who we are behind the scenes, inside our own heads, in the confines of our homes. And He wants us there too. So instead of praying for a traffic jam, tonight I pray for patience and to be slow to anger. I pray for the details of my heart and that He might use the details of the day to make me more like Him.

So I ask you, dear reader, what details can you trust to God today?

Let Him in.

Contentment

“Neither go back in fear and misgiving to the past, nor in anxiety and forecasting to the future, but lie quiet under His hand, having no will but His.”

(from Calm My Anxious Heart by Linda Dillow)

 

The weather this past week was a gift. It smelled like spring—I was careful to breathe deeply—to allow the fresh air to permeate the insides of my body. I wanted it to linger. I relished the blue sky, bike rides, football in the yard, short sleeves, and even a few skinned knees and boo-boos (poor Peyton!).  

IMG_3390[1].JPG

More than anything, however, I relished the way I felt. I told someone on Friday, “I honestly don’t think I’ve felt this well in two years. I feel like a million bucks!”

And I did.

For a moment, I felt like I was the old me again.

As I venture along this journey with MS, I’m learning as I go. I know with certainty the humidity is an energy zapper. It comes in the night and steals the life out of me. But the cold—let’s just say I’ve never given it much weight. I’m discovering it has more power than I thought.

This week of mid-sixties, no humidity and no freezing cold has been such a blessing in the heaviness of Ohio’s winter. It was a perfect reminder of God’s love for us. I don’t think I could possibly have ever appreciated or found so much joy in a week like this before I had MS. Don’t get me wrong—I would have enjoyed it. But I can’t say I would have soaked it in—thanked the God in heaven for an inch of blue sky or a glimpse of sunshine the way I do now.

Last night I listened as the cold returned—the thunder pounded and the wind delivered the bitterness back on our doorstep. Along with it came a certain heaviness in my own body, a jolt back to reality. But I have been challenged recently in terms of CONTENTMENT. This is not a word our culture likes—in fact, it is a word that would bring with it mention of weakness and potential mediocrity. But when we look at life through the lens of Scripture, we see a God who desires us to “give thanks in all circumstances,” to submit to the will of our Father. To TRUST in a God that knows more than we do and loves us more than we could every possibly love Him.

So I choose to thank God for the light of this past week, for a week of reprieve and rest. And I choose to thank Him for today, for the return of cold weather and a reality check on my body and the reminder of the brokenness of this world.

I pray for a heart of contentment and one of thankfulness to a God who makes the sun shine and the clouds move. I am reminded in the Gospel of Mark: “Even the wind and waves obey him!” (Mark 4:41).

Even the weather is a gentle reminder that as much as I may desire it, I am not the old me. I do have MS and it is the portion the Lord has assigned. While I pray for healing and a cure, I also pray for contentment--to give thanks in what the Lord has given me and to see the ways He has used it to draw myself and others closer to Him. 

Multiple Scars

I read this a few weeks back and simply had to share with you:

The city of Brussels is known for its exquisite lace. In the famous lace shops, there are certain rooms devoted to the spinning of the finest and most delicate patterns. These rooms are altogether dark, except for the light from one tiny window that falls directly upon the pattern. Only one spinner sits in the darkened room in the very place where the narrow stream of light falls upon the threads of his weaving. Lace is always more delicately and beautifully woven when the worker himself is in the dark and only his pattern is in the light.
As God weaves His pattern into the fabric of our lives, sometimes we sit in a “darkened room.” The darkness seems suffocating. We can’t understand what He’s doing and can’t discover any possible good in the darkness. Yet, if we fix our focus on our faithful Weaver, we will someday know that the most exquisite work of all our life was done in those days of darkness. As I look back over my life, my deepest intimacy with Him has come from the dark times. The lessons He has burned into my heart when the black clouds hovered are the ones that have calmed my anxious heart.
Yes, faith is difficult, but our faith pleases our Holy God (Hebrews 11:6), and we do not walk the path alone… . (from Calm My Anxious Heart by Linda Dillow)

 

Then this week, a dear friend texted me after reading a post from a few weeks back about the definition of multiple sclerosis.

Multiple means many and sclerosis refers to the scars left on the protective coating after it has been damaged.

(from The Electrifying Story of Multiple Sclerosis)

What she said was somehow so comforting:

“I was just reading your blog and can’t stop thinking what MS means. Multiple Scars…I think of my life and think, wounds start first. Before the scar forms. If the scar never forms, the wound never heals…but it never looks like it used to…
MS is a picture of this. God’s goodness and grace and mercy healing our wounds, changing us forever so we can glorify Him and serve Him and understand more and more… .”

I know that it is at times hard to see God in the darkness--when our wounds are fresh and open. But I pray today that you will see His abundant mercies in the scars—how He brought you out on the other side. Or if you are still in the dark—that you will take comfort in knowing the precious Weaver does not make mistakes. May we remember some of His most beautiful weaving is happening in the dark. Perhaps when we get to the finish line and look back at the beautiful pattern of lace He has weaved for us, we might see the scars are the most exquisite and perfect details of all.

Finding Rest

True confession: I often go back and forth about what I share with you here. Multiple Sclerosis is the platform on which the blog began, and so I feel an obligation, a necessity, to share with you about my health. I believe in 2 Corinthians 1:4 that I might use my trial as an opportunity to comfort others in their trial. But I also confess I am at times ashamed to post about my health. I feel like I’m complaining (which I confess I really do at times!), or that I should only be sharing the good and not the bad, or my most prevalent concern: my trial with MS pales in comparison to others’ trials and so perhaps I simply shouldn’t write at all.

However, I am reminded this week that God has offered this platform for me to write and I cannot know His plans for it. As the name of the blog suggests, I am called to write—especially about my battle with MS--it is an act of obedience.

I didn’t post much this past week because of my health and because I have been struggling with what to share. However, I recently read a brief devotional in my Our Daily Bread pamphlet that helped me better understand how and what to share about this past week:

In All Circumstances

In our suburb we complain about the constant power outages. They can hit three times in a week and last up to twenty four hours, plunging the neighborhood into darkness. The inconvenience is hard to bear when we cannot use basic household appliances.

            Our Christian neighbor often asks, “Is this also something to thank God for?” She is referring to 1 Thessalonians 5:18: “Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” We always say, “Yes, of course, we thank God in all things.” But the half-hearted manner in which we say it is contradicted by our grumbling every time the power goes off.

            One day, however, our belief in thanking God in all circumstances took on a new meaning. I returned from work to find our neighbor visibly shaken as she cried, “Thank Jesus the power was off. My house would have burned down, and my family would have perished!”

            A refuse-collection truck had hit the electricity pole in front of her house and brought down the high-tension cables right over several houses. Had there been power in the cables, fatalities would have been likely.

            The difficult circumstances we face can make it hard to say, “Thanks, Lord.” We can be thankful to our God who sees in every situation an opportunity for us to trust Him—whether or not we see His purpose.

 MS is my daily trial. It’s my reality, and I dare not compare it with anyone else’s daily struggles. However, I can share with you my walk through this valley—the real and the ugly parts of my inner (and outward) fallen humanity. But as this article suggests, I can also share with you the ways I can give thanks in my circumstances. The ways I can choose to see God using my MS for His Glory. So at the bottom of this post, I will reflect on this past week and the ways I can choose to thank God in all circumstances.

***

This week has been an eventful one at the Allerding household. I had a rather impromptu doctor’s appointment with the neurologist last Monday. Two weeks ago, when I was in for my infusion, I lamented of the ongoing fatigue that has attacked me for so long now. “I’m so tired” can’t possibly explain the way I feel. It’s a tired that doesn’t go away with good sleep. It’s like carrying around a dumbbell all day or getting superglue on your skin—it’s heavy—impossible to peel away at times. It’s life-altering. 

I read an article recently that suggests “Upwards of 80% of people with MS experience unusual fatigue, with over half ranking it one of their most troubling symptoms, according to the Society’s MS Information Sourcebook. It’s complex, with many possible contributing factors, and it’s invisible, which makes for huge human problems…” (Tackling Fatigue by Heather Boerner and Bridget Murray Law).

As I sat and talked with the nurse and some of the other patients, they lamented of similar symptoms and urged me to schedule an appointment: “There are medications that could help you with energy,” they encouraged me. “Just talk to them.”

So I did.

It was an encouraging appointment overall—one that at minimum helped me better understand Multiple Sclerosis. She encouraged me with the reminder that I am on THE BEST drug there is for MS. The Tysabri is a disease-modifying drug, which means it is meant to keep new lesions from forming in my brain. One of my biggest questions has been whether or not “pushing through” all this fatigue is ultimately going to harm me down the road. What she said was incredibly helpful and encouraging: “As long as no new lesions are forming in your brain, pushing through will not hurt you any more than it will the normal person walking down the street.”

The key is whether or not I have any new lesions. They feel confident the Tysabri is working, but we will do a repeat MRI in a few months to confirm--no new lesions would be the best news I’ve had in two years, and it would mean my MS is being held at bay.

What she also explained, however, is that while the Tysabri infusion is hopefully holding the MS from progressing it is not going to cover any of the symptoms I already have: my hands, legs, fatigue…. With the fatigue being such an ongoing battle we decided to try a “wakefulness-promoting agent” typically used for treating narcolepsy. A pill. A little less than one week in, I can report that this past week has been a very real struggle amidst the larger battle against MS. The supposed solution has created more bad than good.

While I felt at times I had more energy, I now could not sleep at night. I was not only being attacked by fatigue from my MS but also by insomnia, leaving me up most mornings from 2am on. While I didn’t realize it at the time, due to the new medication I began to feel tightness in my chest, nervousness, anxiety, mood swings, shortness of breath, dry mouth. Three nights ago, during my “wakefulness,” I realized my feet and legs were numb and tingling (also a potential side effect I wasn’t aware of). This was something I hadn’t felt in two years, since the initial attacks when I was first diagnosed.

As a result of all of this—no sleep, the anxiety from the medication, the fear of the numbness in my feet and legs—I had a panic attack in the middle of the night, something I’ve never experienced before—Would I be able to walk? What was happening to me? God, how could you let this happen?? All of this from a pill I’ve only been taking for a week.  

Needless to say, I called Monday and told them I was going off the drug. I already feel more like myself again.

I wanted it to be easy: Here’s the pill. Here’s more energy. Problem solved. But clearly that is not the road I am on. We will eventually try something else for energy but for now, we will take a break.

I appreciate your prayers, dear reader, as we try to navigate these new roads—not just for myself but for the incredible husband, family, and close friends who help me through and watch the struggle most closely. I pray for that repeat MRI—that there will be no new lesions.

I confess I do not like this battle.

I can also tell you I believe there is a God in heaven who has entrusted it to me. And as I mentioned at the beginning of this post, His Word tells me to “give thanks in all circumstances….” Here are some of the ways I can be thankful over the past week:

·         I know He is drawing me closer to Him. In my “wakefulness” both in the day and in the night, I used that time either to pray or repeat Scripture in my mind. I am thankful for the opportunity to pray for the precious people on my heart those nights. I may never know but that He kept me awake those nights to be praying for something or someone specific.… .

·         I give thanks for the Oak Clinic—for a place only a few minutes up the road that specializes in Multiple Sclerosis!

·         I give thanks for the developments in MS treatments—that I am able to be on a disease-modifying drug like Tysabri.

·         I give thanks for the bold reminder this past week that I am not in control. That my flesh is weak. That God is the “blessed controller of all things.” (1 Timothy 6:15)

·         I give thanks for the opportunity to rely on Him and Him alone.

Ultimately, I give thanks that this ongoing fatigue—the wakefulness, the sleepless nights have my mind focused on rest. Please, God, I beg. Help me find rest.

Of this Truth I am convinced: I will find my rest in Him.

 

Yes, my soul, find rest in God; my hope comes from him.

Psalm 62:5

Multiple Sclerosis

I've been thinking lately that I am so grateful for the dear people that take the time to read this blog. And I thought it might be worth sharing a little more about the platform God has given me to do this in the first place.

If you look to the top of the blog, you might be reminded of John 9 and the blind man. You might be reminded that for me, there is a God in heaven who saw it fit to allow me to have a disease called Multiple Sclerosis, commonly known as MS, so that "the works of God might be displayed in me."

I remember growing up that my mom had a friend with MS. I can remember the way my mom talked about MS--it made certain activities a challenge at times, her friend was encouraged to stay active, although that was at times difficult to do. I remember thinking I didn't ever want to have MS.

But that was all I knew. MS is a tricky disease. It is never the exact same for any two people. There is currently no cure.

I confess that the day I went in and was told there was a good chance I had MS the doctor told me not to look it up. "Do NOT research this on the internet," he commanded. "Go nowhere other than The National MS Society website. Nothing else is reliable." 

I remember in the waiting room that I Googled it and saw the word "blindness." I remember that it took me months even to go to The National MS Society website after that. I allowed the doctors and neurologists to explain it to me. Just in the last 6 months have I begun to do more of my own, careful research.

I still know that I do not want to have MS. But the fact is that God entrusted it to me, and so I want to take the opportunity to share a little about MS in a few posts for you, dear reader. I will quote mostly from the The National MS Society as well as a wonderful little book written by the wife of the generous founder of the clinic where I am treated for my MS--a place that specializes only in Multiple Sclerosis--a place I call a miracle.

So...let's start at the very beginning...

What is Multiple Sclerosis?

From nationalmssociety.org:

"In multiple sclerosis (MS), damage to the myelin coating around the nerve fibers in the central nervous system (CNS) and to the nerve fibers themselves interferes with the transmission of nerve signals between the brain, spinal cord and the rest of the body. Disrupted nerve signals cause the symptoms of MS, which vary from one person to another and over time for any given individual, depending on where and when the damage occurs."

"Multiple sclerosis (MS) involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. The exact antigen — or target that the immune cells are sensitized to attack — remains unknown, which is why MS is considered by many experts to be "immune-mediated" rather than "autoimmune."

  • Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
  • The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
  • When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.
  • The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors.
  • People with MS typically experience one of four disease courses, which can be mild, moderate or severe."

 Multiple means many and sclerosis refers to the scars left on the protective coating after it has been damaged.

(from The Electrifying Story of Multiple Sclerosis)

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This morning I was struck by Deuteronomy 6:7:

6 And these words that I command you today shall be on your heart.7 You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. 

When I picked up the boys from school, it came to mind again. So I got their attention and told them with all the gusto I could muster that God loves them. I told them again what I have told them so many times: That Jesus came and died for us and that if we believe in Him, we can live forever with Him in heaven.

I told them that heaven is better than anything we could ever imagine--better than Disney World, better than ten ice cream cones in a row... . I wanted them to desire heaven the way I do--to look forward to it with all of their hearts.

And there was a moment of silence, and then Cameron said, "Well, in The Secret Life of Pets there is this sandwich, and it really stinks...." And the conversation headed off in another direction altogether. 

It was a gentle reminder that I am called to share the gospel, I am called to live a life worthy of the calling I have received (Eph. 4:1). I am called to teach God's word to my children and to do it "diligently." 

But I am not God. 

I think of the sweet conversations I've had with Cameron about his faith--about the love of Jesus. And I think of his love for God's Word already and I pray for his heart. I am reminded that Deuteronomy 6:7 is talking about a lifestyle, a mission, not a one time event.

What an incredibly important (and daily--sometimes minute by minute) mission. 

 

 

 

Satisfied

Heard this at church on Sunday. It's been on repeat ever since...

Satisfied in You (Psalm 42) -- The Sing Team

I have lost my appetite
And a flood is welling up behind my eyes
So I eat the tears I cry
And if that were not enough
They know just the words to cut and tear and prod
When they ask me “Whereʼs your God?”

Why are you downcast, oh my soul?
Why so disturbed within me?
I can remember when you showed your face to me

As a deer pants for water, so my soul thirsts for you
And when I survey Your splendor, You so faithfully renew
Like a bed of rest for my fainting flesh

When Iʼm looking at the ground
Itʼs an inbred feedback loop that drags me down
So itʼs time to lift my brow
And remember better days
When I loved to worship you and learn your ways
Singing sweetest songs of praise

Let my sighs give way to songs that sing about your faithfulness
Let my pain reveal your glory as my only real rest
Let my losses show me all I truly have is you

So when Iʼm drowning out at sea
And all your breakers and your waves crash down on me
Iʼll recall your safety scheme
Youʼre the one who made the waves
And your Son went out to suffer in my place
And to show me that Iʼm safe

Why am I down?
Why so disturbed?
I am satisfied in you

I AM SATISFIED IN YOU

 

Humbled

I felt compelled to pray and ask God to humble me this week. This is a scary thing to do, I confess—not one I do often. But something I felt I needed. Sometimes we just need to be on the lookout for the hand of God or else it passes us by like another car on a busy highway.

Here are a few of the ways the Lord humbled me this week:

1)      Creation: On Wednesday I commented to Brian that it seemed as though we hadn’t seen the sun in days.  Ohio winters can sometimes be cold and gray for days on end—it’s like hiding under a blanket, biding your time in the darkness, knowing you need a breath of fresh air but having to wait for someone to seek you out before the cover can be lifted.

 As I picked up my little boys from kindergarten, I sat in the pick-up line and watched as the clouds raced swiftly across the sky, allowing the sun to play peek-a-boo with the earth below. His Creation never fails to amaze me—the intricacy of a snowflake, the changing colors of a tree in fall, a spider’s web. But this day it was the light. Just the light. That I had said just that morning, “We haven’t seen the sun in days.”

And there it was.

Thank you, Lord.

2)      A great win on the basketball court. Such joy and thankfulness.

3)      A frustrating defeat on the basketball court. Don’t think too highly of myself.

4)       An article someone sent my way: Someone sent me an article on chronic fatigue. MS takes many forms—one of the challenges is that it manifests differently in each individual. While many mark MS by its visible, physical markers like issues with walking, mine currently manifests primarily in the invisible, in particular fatigue.

This psychologist muses on a year of chronic fatigue, and I confess that at times I fear mine might be a lifetime of it (although I’m certain mine is not as constant or severe as he describes). This article came at a time when I needed to know I am not alone.

One part that hit home, in particular about always having been able to just push through without consequence, reads like this…

“Fatigue messes with identity. For 50 years I have done what I wanted to. I have been able to push (even over-extend) my body with little seeming consequences. Fatigue, on the other hand changes how you see yourself and how you relate to your loved ones. Once used to being the one to do things for others, you become the helped. When you feel 80 but you think you should feel like 50, it begins to change your sense of yourself and your place in life. At times I wondered if my career was about to be over. If you make your identity what you can do, fatigue will soon remind you that such an identity is certainly fragile and soon lost.” (from Musings of a Christian Psychologist: A Year of Living with (chronic) Fatigue)

5)      Friendship: This week I experienced so many sweet encouragements from various friends. One dear friend was at a Christian conference and sent me this text message of encouragement…

 “What we learned today—it is an honor to be trusted with pain, and it is to be cherished…because suffering always precedes multiplication. Praying you can learn to see MS as a true honor and high calling from the Lord (because I know that’s not the normal human reaction to it). And that we can rejoice because He has overcome. But before we can take heart that He overcomes, we will have trial in this world. “In this world you will have trouble, but take heart, I have overcome the world!”

6)      Sleeplessness: Many nights I do not sleep well, and I find myself wide awake praying. Praying. Sometimes for hours. I saw a friend this week and she asked me if I was sleeping any better. I told her sometimes I think to myself, Really, God? Do you really need me up praying right now? Wouldn’t I be worth so much more rested in the morning?

And what she said was so humbling: “Man, He really has you in a state of dependence.”

What mercy.

***

What I learned this week as the Lord humbled me in so many gentle and sometimes challenging ways: “But as for me, it is good to be near God.” Psalm 73:28

Dream Big

Several months ago Charlotte sat on my lap at the doctor's office looking out the window. I heard her gasp and point across the street at an outdoor basketball court where two boys were playing a game of one on one. She was aghast. 

"Mom!" she cried. "Boys don't play basketball!"

I smiled both on the inside and out. All she's ever known is girls on the court. Can you tell her mama is a coach?

You go, girl. 

As my favorite Disney commercial says, "DREAM BIG, PRINCESS!"