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.
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.
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.
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.
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.
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 rememberedhow 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
This weekend has been a rough one on my health. I have just felt icky all weekend. My hands hurt like crazy. My squeezing in my ribs hurts a lot today. I have started getting horrid, sharp nerve pain in my legs again. I am struggling like crazy with fatigue and memory problems. I woke up this morning for the first time in awhile with the first thought that entereed my mind being, "I am so stinking tired of all this pain... I just want it to REALLY stop."
Through my back problems, playing music was such an outlet. I would process through a lot of stuff by closing the door to the study and just play the piano and guitar for hours, worshipping, reminding myself of all the promises God has given me. However, with the issues I have now with my hands, playing the piano hurts and it is very unsuccessful many times. I can't use my pinky and can barely use my ring finger. So I am playing with three fingers. My fingers physically will not go some places on the guitar. The pick slips and I can't feel it slipping, and it starts sounding weird, and I realize it has turned all the way around. I have no sense of where my fingers are unless I am looking at them, and I think, "woah! The sounds way off!" and I look down and realize my hand is 2 frets higher than it should be.
This weekend I was working on a song called, "He's Always Been Faithful" by Sara Groves. The words to one of the verses said,
Morning by morning I wake up to find The power and comfort of God’s hand in mine Season by season I watch Him, amazed In awe of the mystery of His perfect ways All I have need of, His hand will provide He’s always been faithful to me.
I felt it was super ironic to sing these words as I was struggling so to play the notes. This one outlet I had in my life to really feel close to God, to bask in his presence, to internalize His word and His promises is feeling like it is being stripped from me. I don't feel like whatever this is that is stripping my hands of the ability to play music is a "perfect way." I don't really feel like God is being faithful to me in feeling like I can't worship anymore.
The song goes on,
This is my anthem, this is my song The theme of the stories I’ve heard for so long God has been faithful, He will be again His loving compassion, it knows no end All I have need of, His hand will provide
He’s always been faithful to me.
The Bible is full of God's examples of His faithfulness to people after many struggles. Mary. Hagar. Sarah. Job. David. Abraham. Joseph. The list goes on and on.
Yet, today I am really trying to rest in the words of Paul. Paul didn't really ever just have his life just fall in to place like some of these people. He was in and out of prison. He had some sort of "thorn" he dealt with that he kept askingGod to take it away, but it seemed God never did:
7 To keep me grounded and stop me from becoming too high and mighty due to the extraordinary character of these revelations, I was given a thorn in the flesh—a nagging nuisance of Satan, a messenger to plague me! 8 I begged the Lord three times to liberate me from its anguish; 9 and finally He said to me, “My grace is enough to cover and sustain you. My power is made perfect in weakness.” So ask me about my thorn, inquire about my weaknesses, and I will gladly go on and on—I would rather stake my claim in these and have the power of the Anointed One at home within me. 10 I am at peace and even take pleasure in any weaknesses, insults, hardships, persecutions, and afflictions for the sake of the Anointed because when I am at my weakest, He makes me strong.
- 2 Corinthians 12:7-10
However, Paul wrote some of the most joyful passages in the Bible:
18 Now I’m sure of this: the sufferings we endure now are not even worth comparing to the glory that is coming and will be revealed in us. - Romans 8:18
28 We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan. - Romans 8:28
38 For I have every confidence that nothing—not death, life, heavenly messengers, dark spirits, the present, the future, spiritual powers, 39 height, depth, nor any created thing—can come between us and the love of God revealed in the Anointed, Jesus our Lord. - Romans 8:38-39
32 Instead, think back to the days after you were first enlightened and understood who Jesus was: when you endured all sorts of suffering in the name of the Lord, 33 when people held you up for public scorn and ridicule, or when they abused your partners and companions in the faith. 35 Remember this, and do not abandon your confidence, which will lead to rich rewards. 36 Simply endure, for when you have done as God requires of you, you will receive the promise. - Hebrews 10:32-33, 35-36
12 Do not forget to rejoice, for hope is always just around the corner. Hold up through the hard times that are coming, and devote yourselves to prayer. - Romans 12:12
and of course, the most famous passage on joy:
4 Most of all, friends, always rejoice in the Lord! I never tire of saying it: Rejoice! 5 Keep your gentle nature so that all people will know what it looks like to walk in His footsteps. The Lord is ever present with us. 6 Don’t be anxious about things; instead, pray. Pray about everything. He longs to hear your requests, so talk to God about your needs and be thankful for what has come. 7 And know that the peace of God (a peace that is beyond any and all of our human understanding) will stand watch over your hearts and minds in Jesus, the Anointed One. - Philippians 4:4-7
The whole book of Philippians was thought to be written while Paul was in prison. And not the prisons like we have today... but where he may have been sitting down in a deep hole in the ground, chained to a wall, with no light or windows. Paul was really in the Pit of Despair. I think to the Princess Bride scene where Wesley finds himself in the Pit of Despair. There is no hope of escape, and all that he will know there is torture.
Yet, he did not let the Pit of Despair bring his spirits into the Pit of Despair. He still rejoiced in God's goodness. He knew that God was faithful even when his circumstances suggested otherwise. He knew the promises that God had for him and he trusted that God would provide all He needed. Buttercup's love gets Wesley through his pit of despair in the Princess Bride. It even gives him the opportunity to only be "mostly dead" instead of losing all hope of life.
True love. This is what revives Wesley. He goes from mostly dead to full of life (even if he has to be carried the whole way in and out of the castle). God's true love revives Paul's spirits while He is in the Pit of Despair, and gives him life and joy again. I hate that I can't play music right now. I hate that even writing this blog has been super painful on my hands. I hate that I feel like my ways of worship and reflection seem to be taken away from me. I unfortunately don't have a magic pill with a chocolate coating to make it go down easier that will transform my spirits magically to joy. But as the days go by, I hope that I can look to the way Paul approached his life in the Pit, knowing that God would set his feet upon the Rock, and he would have joy. And rest in God's true love to bring me life again, in whatever form that is.
Have fun storming the (joy) castle! Think it'll work? It will take a miracle!
22 How enduring is God’s loyal love; the Eternal has inexhaustible compassion. 23 Here they are, every morning, new! Your faithfulness, God, is as broad as the day. 24 Have courage, for the Eternal is all that I will need.My soul boasts, “Hope in God; just wait.”
