Restoration

For the last few months, we had been "operating under the assumption that Multiple Sclerosis could be the cause for my current problems." This week the Official Diagnosis came in. I had a spinal tap after an exacerbation where I had lost some vision. In spinal fluid, there are certain markers that are apparent in 95% of patients with MS. After almost 8 months of tests and worry and fear and more tests and more worries and more fears, the spinal tap finally came back as positive for Multiple Sclerosis. An answer. A diagnosis. More fear.

Unfortunately, right now, there is no cure for MS. And it is a nasty, nasty disease. Basically, your white blood cells see your brain and spinal cord as something bad that needs to be attacked. When this happens, the myelin sheath on your nervous system is eaten away, and it causes nerve impulses to not transmit correctly through your body. Nerve impulses for things like walking. Speaking. Thinking. Moving. I am learning that my vision can go. That getting too warm causes me to pass out in a restaurant. That there will be times I can barely move my extremities. Here is a great video that explains the science of MS.

Yesterday I opened my health record app through my doctor's office on my phone. I noticed something new had been added to my health record. There it was: Multiple Sclerosis.

I have been hearing the "possibility of MS" since August. But when you see it there, written in your health record, staring back at you, as a finality, it stinks. Like hardcore. It isn't going to change. It is what it is. A disabling, permanent, horrible disease.

And then the fear came. Fear of living like this. Fear of more episodes. Fear of the unknown of how this body will react with my body. And then anger. Why me? How could this happen to me? Why is God allowing this to happen? Why is He not stepping in and doing something about this? Do I not matter?

Right now it is the season of Lent in the church. A time of preparing ourselves for the celebration of Christ conquering fears, our anger, our sorrow and bringing forth new life. Today I was listening to a sermon, and the pastor was preaching on Jesus healing a leaper in Luke 5. This man, whose body was completely ravaged by disease, says to Jesus, "Lord, if you wish to, You can heal me of this disease." Jesus then says, "I do want to." and the man is healed (more on this in a moment).

This REALLY sat raw with me for awhile. Lord, if you want to? Why would God not want to heal me? Why would he say, "Yes" to heal some and "Nah, don't feel like it" to others? Still, right now, I don't really understand why this interaction happens with these words. I do believe that God's desire is not for us to suffer. It is not his ultimate plan for me to be filled with pain and sorrow all the time. But I also am filled with a realistic faith that there is not a cure for this disease.

I did have someone tell me a quote this week that, "healing is the restoration of meaning to life." I really found this powerful. Physical healing will most likely not be in my future. Yet, to have restoration of meaning to life, that is possible.

Meaning to life in friends supporting me.

SPE Friends dressed in orange

Sandy and Nora wearing their orange

Meaning to life in fighting with all I got.

Steroid treatments to fight an "episode"

Meaning to life in learning new limitations. Meaning to life in soaking up beautiful spring days. Meaning to life in LIVING life through it all.

And I do believe that God can orchestrate this healing and WILL. When Jesus healed the leper in the passage in Luke, it says that Jesus touched the leper. I learned from the sermon today that this was hugely significant. Lepers were "unclean" and were not allowed to interact with people in the Jewish culture. When Jesus touched this man, Jesus also became "unclean." He took on the sickness, the sorrows, the disease, the status of this man. He took it on and he told him it was no more. He healed this man and restored meaning to life for this man. He was able to return home, return to the temple to worship, return to a life. Jesus met this man in his ashes, in his mire, in the pit, and made something new and beautiful in his life.

Right now I still feel very much in the ashes, in the mire, of this diagnosis. Yet, during this time of preparation to celebrate new life in Easter, perhaps it is a time where I can prepare for a resurrection of my new self. A self that has restoration of meaning to life through Christ's love. A self that is broken, but made new by God. A self that sees the hand of God reaching down and touching me with all my infirmities and sorrow, and still is able to make something beautiful and new.

Be held

I am very medically unique. (That sounds better than "just short of a disaster of a body")

3 back surgeries in 13 months.

A spinal cord stimulator implant (I have met one other person in person who has one)

Severe nerve damage and beginnings of RSD like symptoms.

Still fairly bad back pain at times.

And now MS.

I often feel VERY alone. Trying to describe what it is like to live through every day to other people in itself exhausts me. I often feel like many people have no idea and could never understand what a day in this body is like. I feel like I am living on my own little island of medical disaster. 

I think that often I tend to REALLY push people away when I am having a bad day. I clam up. I shut down. I cave in on myself. I have been told many times when I am really in my hole of defeat and despair, "Don't attack your support system!"

And I feel often like God has forgotten about me. And things keep piling up and making me feel worse and worse, I wonder sometimes if God is even listening to my pleas for comfort and peace and to feel Him walking beside me and decrease my pain. And I cave even more inward.

This evening, I was driving home and heard the song, Be Loved by Christy Nockels. The words spoke deeply to me.

Have you ever let yourself be held by the one who holds this world

Have you ever told your soul to rejoice that His arms are open wide

You could even try to run away but He'd come running after you

So just be held, be held, He holds you

As these words came over my speakers, tears rolled down my face. When we turn inward and focus on our pain, it is so easy to miss all the love that is around us. All of those who are praying for me (many who I do not even know.) A caring husband who is always there for me to cry on, keeps me fed and stays by my side, even when I try to push him away. Friends who are always there to listen and make me laugh. A God who does love me, who welcomes me back even when I try to run away. Why is it so hard to let myself be held by those who love me? Who care for me? 

It is so easy to turn inward and wallow in your misery. You make yourself vulnerable when you open yourself up to be held by people. To be loved by people. To run into open arms that are always there, no matter what you do. It is easier to let yourself focus on your pain instead of open your wounds and scars for others to see. But oh, the rejoicing and ability to let go when you let yourself be held.

Christy Nockels has another song, Healing In Your Hands, that also brought tears to my eyes this week.

No sickness, no secret

No chain is strong enough

To keep us from Your love

To keep us from Your love

How deep? How strong?

Now by your grace I stand

Healing is in Your hands.

 Maybe for you it is not a disease or a pain problem. Perhaps it is fear. Perhaps it is stress. Perhaps it is anger. Perhaps it is a broken relationship. But if you can reach up to peek your head out of your hole, you can see the love around you. From people. From God. From the beauty of creation. And oh, the healing that can take place from this love, and from letting someone hold you.

Thank you to my support system... To my friends, my family, my God, who never cease to love and pray for me, and who always are there with arms open wide, and let me just be held. So much love to you.

Truth is...

In January we went back to the doctor to discuss all my "issues". With some new evidence in my symptoms, I was offered treatment for MS. Some of my new symptoms "suggested the presence of other lesions" which could give me a diagnosis. We decided to wait for now and see if there are possibilities for us to have a family before fully delving into this diagnosis.

Since all this started, I was pretty sure with my research that I was probably dealing with MS. I was not surprised and shocked when the doctor finally said he thought that was my diagnosis in January. I had spent time grieving all of it back about September. But I always hoped that the symptoms that I was experiencing would have a time of "remission". That there would be times again that I might go back to normal.

Doctor said probably not. The damage has been done to my central nervous system. I will probably never get the feeling back and the constand, unrelenting horrid pain out of my hands. I will probably feel constant fatigue for the rest of my life. I will get "buzzing" in my feet frequently and experience bad vision issues.

I am also 29.

If I live a "standard" life, I have another 40ish years to experience these wonderful things. And these are just the constant things... It doesn't count waiting for another debilitating flare-up, or other side effects that may continue to pop up.

40 years.

When I look at it this way... Whew. That is completely overwhelming. Sometimes a day is hard enough to get through, let alone a week... And I have to deal with this for YEARS?

Recently, I have had some people say, "I am praying for full healing for you." How nice would that be? Complete healing? And so many people are praying for that for me. For a miracle. For no more pain. For full restoration. Not dealing with this for years.

And yet, I wait.

If so many people are praying, then why the heck am I still sick? Why can I only play music with lots of pain? Why do I feel like I am going to collapse from exhaustion most of the time? Come on God, are you there? I am praying this, others are praying this. Do I not have a heart right with you? Are you not listening? Are you even real? Because if you are, I am pretty mad at you.

I recently started a book called, "The Storm Inside: Trade the Chaos of How You Feel for the Truth of Who You Are" by Shelia Walsh. In her book, she talks about how no matter how you feel, you must hold on to the truths that you know. The Bible is full of examples of heartbreak, sadness and despair.

9 Even still, I will say to the True God, my rock and strength:
    “Why have You forgotten me?
Why must I live my life so depressed, crying endlessly
    while my enemies have the upper hand?”
10 My enemies taunt me.
    They shatter my soul the way a sword shatters a man’s bones.
They keep taunting all the day long,
    “Where is He, your True God?”

-Psalm 42:9-10

Yet,  no matter what I am feeling, there is truth. Even when I am feeling like I am alone, truth is... I have a huge support structure of family and friends. Even when I feel like I cannot go on, truth is... There is strength and smiles that get me through every day. Even when I feel like 40 years is too long to live like this, truth is... I will be blessed with many things that are not defined by my illness. And when I wonder why God doesn't love me enough to grant me healing when many others are healed of illnesses, truth is... His affection and love run deeper than I could ever comprehend.

The Eternal your God is standing right here among you

and He is the champion who will rescue you.

He will joyfully celebrate over you;

 He will rest in His love for you; He will joyfully sing because of you.

Zephaniah 3:17

And as I hold on to those truths, instead of how I feel, the hope will follow. Walsh writes in her book, "...truth leads to hope. Truth is a lighthouse on a stormy, pitch-black night that steers us clear of the feelings that would wreck us." Psalm 86:11 says 

O Eternal One, guide me along Your path
    so that I will live in Your truth.
Unite my divided heart so that I will fear Your greatname.

So, truth is... This is not an easy path. Truth is... I will have many hard days. Truth is... I will have many more tears shed over it in the rest of my journey.  Truth is... I am NOT alone. Truth is... I may not be healed ever. But Truth is... How He Loves Us So. Truth Is... All of a sudden, I am unaware of these afflictions eclipsed by glory. Truth is... How great His affections are for me.

How wonderful that all these remain true, today, tomorrow, and in 40 years, no matter what I am feeling.

Repeat the sounding joy...

My last post reflected on words in Christmas words that have the power to bring us hope. This week I was thinking about a different Christmas song.

A few years ago, as I was dealing with my back problems and horrible chronic pain and my car getting totaled by thieves and my mother-in-law going through cancer treatment, I decided my new favorite Christmas song was Have Yourself a Merry Little Christmas. And it was my favorite song for this one line,

Next year all our troubles will be out of sight

That one line became the mantra of my Christmas that year in 2010. I kept hoping for the next year to come so that things would get better.

Alas, 2011 came and things didn't get much better. Bryson's car got everything stolen from it, my back problems and chronic pain got worse, and I ended up having to have back surgery. But when that song came on the radio that here, I knew that it was still my song. Next year all our troubles will be miles away. 2012 would be our year, I just knew it.

2012 did bring a lot of joy, like a new job for me, being back in Colorado with our families, Bryson starting his career as a pastor. But our troubles were very far from miles away. I had two back surgeries in 2012. I was living in tremendous amounts of pain. We couldn't get things together it seemed. My Christmas season last year was spent on the couch recovering from my spinal cord stimulator surgery. Yet I still knew, when I heard that song, that this new implant would be the key. I knew that it next year our troubles would be out of sight.

And for a while there, I thought 2013 would be it. I was starting to feel better after my last surgery. We scheduled a trip to Chicago to celebrate Bryson's 30th birthday. Bryson was given the opportunity to start at a new church and preach every week, something he felt called to do. Then June hit, and all seemed to fall apart. Bryson busted up his knee, which required two surgeries. My car died, and we needed to get a new one. Then all of this new stuff hit with my health, and it just seemed to be the icing on the cake from the last three years.

This week I was bawling my eyes out talking to my friend about this simple song from the simple line, next year all our troubles would be miles away. I don't have hope for the upcoming year anymore. I don't feel like next year my troubles will be far away as were dealing with this mystery illness. I am not sure at this point, that for my health, that ever my troubles will be out of sight. I am not looking forward to 2014 as a fresh start, thinking that everything is going to be peachy keen when the clock hits midnight on January 1.

Yet another line popped into my head after that conversation with my friend. 

Repeat the sounding joy.

Repeat the sounding joy. Through the struggles, there has been much to be joyful about. My mother-in-law is back in good health. We were given the blessing of a beautiful home, and help to put furniture in it. I had help to get new cars both times the cars fell apart. When everything in Bryson's car got stolen, our church back in Longmont provided some resources to help him get a new computer so he could continue his seminary work. We have a fun, spunky, sweet puppy in our family this year. We get to spend birthdays and holidays with our family back in Colorado. I get to work with amazing kiddos each year, and hopefully provide some love in their lives every day.

Repeat the sounding joy.

Perhaps it is time to stop looking towards and hoping for our troubles to be out of sight all the time. We have dealt with a lot as a family in the last few years, yet we must look for the joy in life. Look for the joy in all of our blessings. Look for the joy in the puppy asleep on my lap, and children's smiles every day. Look for the joy in the hope and light that Advent brings. Life is full of trials and tribulations. That much is always going to be true. But instead of hoping for the better times, and waiting for those to bring and celebrate and recognize joy, I am going to try and find my joy today. Here. Now. Even through all the mess.

Repeat that sounding joy my friends.

with us...

Yesterday I went to a new, even more specialized doctor at the University Hospital. The first level of specialized doctors could not figure out what to do with me.

The doctor gave me a diagnosis of myelopathy. My understanding is this means there is something wrong in my spinal cord, probably in my neck. There are a bunch of things that fall under this category. I was not really given a treatment plan. I was told the numbness in my hands and arms is probably residual from my "episode" I had in August and  it may never go away. I was told another "episode" would be an indicator that I might have MS. But I could never have another one. 

And that is that. Not much to do, just try to manage the pain in my hands and wait to see if my whole body blows up again. Not super encouraging.

A lot of thoughts have gone through my head. Everything from, "Thank goodness, we are at the end of this investigative process" to "Is my body going to blow up again in a few weeks?" to "What does this really mean for me" to "How can I live the rest of my life with these issues and never really having something to do about it?"

I walked into the nurse's office at school after my appointment yesterday. She had written on a small sticky note on her wall, "Emmanuel... God with us." It was so simple. Just a few words on a sticky note that had been quickly scribbled down.

At this time of year we sing songs that we have sung for years. O Holy Night. Joy to the World. O Come, O Come Emmanuel. Yet we often don't stop and let the words really resonate in our souls, due to their familiarity. Think on these words... a thrill of hope. and wonders of His love. disperse thou gloomy clouds of night. Those familiar words can hold such power when we stop and think about them.

I grew up singing many songs that had the words "Emmanuel, God with us" in the lyrics. But when I saw it written down on that simple sticky note, it hit me hard. The name that was given to Jesus was "God with us". God walking with us. God sharing our pain. God WITH us. He does not leave us to walk these paths on our own. 

 

God is not healing me right now, and the possibility of living with so much limited use of my hands, vision issues, horrid pain, memory problems and incredible fatigue, not to mention the possibility still of one day waking up being numb from neck to toe again scares me. I am still trying not to think about it much, and still process (a shed some tears) when I do think about it. Yet I know God still has so much for me to do, and He is Emmanuel, God with us, and I hope that through it all I can prove the wonders of His love.

God box

My beautiful friend gave me an amazing gift for my birthday.

It is a box. And it made me cry when I got it.

It came with a book called The God Box, but I knew before I even saw the book what the box was. I helped my friend pick one out for her husband the day before their wedding. She has told me much about these boxes she has. This box is a place to put all my hopes, fears, worries, gratitude. It is a place to put all my prayers.

I was so excited when I got it. There is so muc going on right now that I could probably fill it in one night if I wrote down everything, But I had not used it yet. Every time I started to open it, a wave of fear came over me.

One of the stipulations of the God box is that once something goes in, it cannot come out. When you put it in, you are giving it to God to take care of. And there is a lot in my life right now that I just am not sure that I can really give all to God. I don't feel like I can trust Him to take care of it... I need to hold on to it.

There have been so much of this journey that I have trusted God wholeheartedly. When all my back problems started, and even at the beginning of these new trials I have gone through, I started very sure that "He's always been faithful, I trust that God will take care of this too."

But with every new test that is scheduled and no results come from it, with every new question that comes up from the lack of results, and with every "you need more surgery" (Husband this week), I have felt a little bit of that trust that I felt and a whole lot of hope seep away. And with every bit of hope and trust that I felt go away, I feel like God is farther and farther away from me.

Why would I put something in a box as a prayer to God when he keeps saying, "no" or "wait now" to every prayer that is whispered at night, that is sung every morning as I drive, that is said through sobs. Why would I symbolically put it in the box when I don't trust God to really take care of it? When I am so angry at Him for not taking care of me?

I was walking the dog tonight, which is often my time to really clear my head. My music was playing,  and Audrey Assad's Show Me song came on. The song chorus says:

Bind up these broken bone

Mercy bend and breathe me back to life

But not before you show me how to die

As I was walking, I thought, "How much more, God, do I need to be shown how to die before your mercy breathes over me?"

Apparently, a lot, if I cannot even surrender writing down a simple prayer to go in a box.

It is about surrender. And not just one moment of surrender and then all is better. Surrendering constantly. Every moment. I will probably have to write the same prayer to go in the box multiple times. I can be ok with that. I want to be able to "follow the rules" and make that one paper prayer the last time I worry about that issue. But that will not be how it is for me right now. Surrender will be a daily thing... An hourly thing... A minute by minute thing. And I think that is okay.

The end of the song says:

So let me go like a leaf upon the water

Let me brave the wild current flowing to the sea

And I will disappear into a deeper beauty

But for now just stay with me,

God, for now, just stay with me

There is a prayer in the box right now. A simple prayer of surrendering. Not even a big request like total healing of my broken body. Just a prayer for hope. But a big surrender. Surrendering my despair and trusting for hope. And for now God, before you let me disappear into a deeper beauty, as you reveal your hope to me, just stay with me. For now just stay with me.

All to thee, my blessed Savior, I surrender all

Though sorrows like sea billows roll

Hope has been very hard to come by these days. My health just seems to be deteriorating more and more, and we struggle with the doctors office to get information, and they don't even really have that much information to give. My issues are not only affecting my hands and arms and giving me horrible problems with fatigue, but I am again experiencing intense squeezing my torso, and I have started having vision problems, especially when the fatigue really hits. The doctors cannot figure out what is wrong with me. There is just test after test, waiting after waiting, lack of results after lack of results. I am hoping to have a test this week that will look at the myelin in my nerves and how it is functioning in my body. (Insurance has approved it, but the doctors office won't call me to set it up. Yet another stress headache of this whole situation) If this doesn't show anything, or even if it does, they might send me to the multiple sclerosis clinic in Denver to have a more in-depth work up done to try and determine if in fact it is MS.

With all this going on, I feel as though the words that people have been using to comfort me have just been hollow. If I hear one more person tell me that God gives the biggest trials to the people that can handle it the most, I might scream. Even at times the words of scripture have felt empty and hollow as I search for something to make it better. Hearing that God's love covers all fear in church last week did Very little to comfort me. I couldn't feel God's love. I can't feel his comfort surrounding me. I keep searching for devotionals or scriptures that really speak to me, and I just come up empty. Even music that once brought me to tears at the awe of how God loves and works in my life isn't hitting me with the same realizations and truth that it once did. I just cannot find something to bring me hope.

I don't say all of this to make you feel bad for me or for someone to try and call me up and explain to me how God really does love me with words that they think will be new and encouraging. I say this to share my weakness, my vulnerability, my admission to sin of not trusting God. And today, that sin was really brought forth to light in the sermon that Husband preached at church today.

²⁴ The boat was in the water, some distance from land, buffeted and pushed around by waves and wind. ²⁵ Deep in the night, when He had concluded His prayers, Jesus walked out on the water to His disciples in their boat. ²⁶ The disciples saw a figure moving toward them and were terrified.

Disciple: It’s a ghost!

Another Disciple: A ghost? What will we do?

Jesus: ²⁷ Be still. It is I. You have nothing to fear.

Peter: ²⁸ Lord, if it is really You, then command me to meet You on the water.

Jesus: ²⁹ Indeed, come.

Peter stepped out of the boat onto the water and began walking toward Jesus. ³⁰ But when he remembered how strong the wind was, his courage caught in his throat and he began to sink.

Peter: Master, save me!

³¹ Immediately Jesus reached for Peter and caught him.

Jesus: O you of little faith. Why did you doubt and dance back and forth between following Me and heeding fear?

³² Then Jesus and Peter climbed in the boat together, and the wind became still. ³³ And the disciples worshiped Him.

-Matthew 14:22-32

I feel like I've been trying to jump out of the boat on my own and walk on the water. But I feel like I'm sinking. Sinking fast and sinking hard. I feel like there is nothing that is going to bring me back up. If you look at the scripture, Peter was doing great when he had his eyes focused on Jesus. He was confident as he stepped out of that boat. But then it says he remembered how strong the wind and waves were around him. He let go of the truth of Christ and instead let his own fears of his circumstances be what he focused on. I, like Peter, am looking at the wind and waves all around me instead of fixing my eyes on the hope that Christ truly does bring. I am looking for things that speak to me, instead of letting the people around me and the scripture that I read speak its truth. 

The words that really hit me hard as I read this scripture in church this morning, was when Jesus says, "oh you of little faith." He is talking to me right there: "O Sarah of little faith. Stop looking at the waves of pain around you. Stop worrying about the winds of the doctors office not calling you back. Stop letting the uncertainty of the ocean surface prohibit you from trusting me. Stop doubting that I am there, and rest in the fact that I care for you. I called you out of this boat, and I am here to walk alongside of you."

Things may never get truly better for me, especially if it really is multiple sclerosis that we are looking at facing, or maybe something even worse. I know there will be many more days where the words, "Oh ye of little faith" are the words I will earn for the day. There will be many more times where I focus on the waves and the noise of my life instead of starting each day grasping Jesus' hand to walk steadily through the storm.  But, when sorrows like sea billows roll, I hope that someday I will be able to say, whatever my lot, you have taught me to say it is well with my soul. I am definitely not there yet, but this week, instead of searching for words and scriptures with my own agenda of finding hope, I will quiet my heart and listen to the words that He is speaking to me. I will step out of the boat He has called me from and trust in the hope He gives.

You liberate me from my own noise and my own chaos

From the chains of a lesser law You set me free

In the silence of the heart You speak

In the silence of the heart You speak

and it is there that I will know You 

and You will know me

in the silence of the heart

You speak, You speak.

-Audrey Assad