Shaken

This morning I feel shaken.  So I did a search for "shaken bible verse" and this is what I got.  It's pretty cool to read all the different translations.  (if you're a word nerd, anyway)  It came up with Isaiah 54:10, "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the Lord who has compassion on you. (NIV)   What I love is that I had just been praying, "God I can't feel your peace."  I love that God so quickly reminded me that my ability to feel his peace has nothing to do with the reality of his peace being present.  Our pastor, Mike, likes to remind us that "feelings lie".  My feelings tell me right now that I'm not in God's presence because I don't feel him.  But He's there.  He never leaves.  Wesley's notes on this verse tell me, "the mountains shall sooner depart from their places than any kindness depart from thee."  Yeah, I know it's outdated language but what an awesome reminder.  When I look out my window in the morning I expect Mount Miguel to be right where it was yesterday and the day before and the day before.  But so often I feel shaken and think "where's God?"  Mount Miguel is more likely to be gone when I look out my window.  Matthew Henry's Concise Commentary says, "We are neither to despond under afflictions, nor to despair of relief.  Mountains have been shaken and removed, but the promises of God never were broken by any event."  The events going on in my health right now are big.  But they're not big enough to break God's promises.  These reminders are enough to remove the ball of anxiety from my stomach and settle me back on ground that can not be shaken.  

There's a monster in my closet

I woke myself up this morning from a dream yelling "Daddy!!"  My 20 year old daughter came running in to see what was wrong with me.  Obviously, I was fine.  But I was dreaming that I had woken up and a cupboard over my closet (from the house we lived in 6 years ago) was opening on it's own.  I must have jerked in my sleep which knocked my cpap mask slightly off which makes the machine loud.  The sound--a hissy, gurgly sound--crept it's way into my dream and I was sure there was something in the closet cupboard hissing or growling at me.  So I yelled.

Now here's the crazy confession, I've always been afraid of my closet.  Any bedroom closet.  Growing up I couldn't sleep if the closet door was open, and often even when it was closed I was sure that there was a monster in there.  I know a lot of kids have that fear. But in college when I had a little apartment by myself I was happy that the closet wasn't in the bedroom and was actually in the living room.  But I still always had to look in there before bed and then make sure the doors were closed.  I still can't sleep well if the closet door is open.  I wake up in the night and without my glasses the shapes all meld together and look frightening.  

The other part that was weird was that I yelled "Daddy!"  I always called my Mom as a kid.  I can remember the only time I ever called my Dad was after hearing my Mom tell my Dad she didn't know why I couldn't call him when I was scared in the night.  For that one night, I called out for Daddy but went right back to the comfort of Mom after that.  And I don't call my husband "daddy" unless I'm talking to my kids.

So as I laid in bed this morning wondering why I would yell and dream of monsters in my closet, I thought of my life right now.  As a kid the monsters in my closet were big scary things that I was afraid were going to hurt me or worse. I started each night trying to convince myself that I had nothing to be afraid of.  My mom even went through a period of time where she would use the logic of showing me the closet, moving all the clothes around before closing the door.  It helped for a few minutes and then the fear would creep in, what if the monsters could hide? I felt like I needed protection as the fear threatened to overwhelm me.  Mom would come and all my fears would melt away as long as she was present.

My monster is now the uncertainty of my life.  Will the neurosurgeon I'm going to see next Thursday take my case or will he determine it's too complicated?  If he refers me out of network will I have an insurance nightmare trying to get them to cover me?  Will any doctor know how to treat this CSF leak?  What if I have to deal with headaches for the rest of my life?  What if they treat it and I end up with surgery complications?  What if they don't treat it and the fuzziness I feel gets worse and turns to real memory loss and I lose other functions because of cranial hypotension?   Those all combine to form a pretty big monster.

My first thought was that I expected Rick, my personal monster-slayer/husband to come running but why on earth would I have called him "Daddy?"  But then I thought about my father God.  He is the only one who can banish the monster of fear.  He's the one who didn't give me a spirit of fear.  He's the only one who knows exactly what the future holds for me and how all of this will turn out.  I also know that he is worthy of my trust.  He doesn't promise me that he'll take care of this for me immediately.  He doesn't promise that I won't have pain, he doesn't even promise that I'll be physically healed on this earth.  But he does promise that he'll never leave me or forsake me.  And because he promises me that he'll be there I know that I can rest in his presence.  I know that his presence is enough to melt my fears, no matter how big the monsters seem.

The 4 friends

It's almost been a week since I found out that my pleural effusion is caused by a CSF leak.  To say that I've been overwhelmed with the information is probably a huge understatement.  Part of me is validated that finally I have proof that what I've been suggesting to my doctors for years is actually happening.  Part of me is relieved that the effusion isn't the result of some rare form of cancer.  But I'm not sure what this means for my life and I'm not sure how or even if they'll treat it.  I know that my dural ectasia complicates things significantly.  I have an appointment on October 27th with a neurosurgeon and until that time I'm resting and trying to process and cope.  So since I'm resting I've had lots of time to think.  

One of the things that has been on my mind a lot in the last few weeks is the story from Mark 2  where the 4 men carry their paralyzed friend to Jesus.  One day I was overwhelmed with anxiety as we were waiting for the results to the latest round of tests. I felt weepy and I called my friend and told her I needed prayer.  I shared all of my worries with her and she prayed for me right then.  She also said that she was with a few of our other friends and could ask them to pray too.  That was when I first started thinking about the 4 friends.  I know prayer is the quickest cure to anxiety.  But sometimes my anxiety is so high that I can't seem to think clearly, let alone pray.  After I hung up I felt my heart rate slow back to normal and the anxious fluttering in my stomach subside.  I needed my friends to carry me to Jesus because at that time I wasn't able to get there on my own.  

The other reason that this has been on my mind is because I'm not really that good at letting my friends carry me.  I want to be the strong one.  I want my friends to be wowed by how faith-filled I am in the face of hard circumstances.  I want to be the comforter, not the comforted.  I want to be the one reminding someone of truths from scripture, not the one being reminded.  Truth is, I hate being needy.  But right now, I do need my circle.  I was imagining what it would have been like if I was the guy in scripture.  I can see myself saying "seriously you guys, I can get to Jesus on my own.  You don't need to carry me."  And then what?  Try to drag myself there even though I actually can't make it alone?  Or I can imagine telling them not to mess up the roof to the house because I didn't want to be that much trouble.  As I imagine these things I think of how life would have been different for those 4 friends if they hadn't been allowed to carry their friend to Jesus.  Those 4 men got to witness a miracle firsthand.  They got to be commended by the Son of God for their great faith.  They got to be a part of something huge, something eternal.  

Maybe these things come to my mind because it makes me feel better to hope that my friends are getting something out of helping me.  Maybe it's still the result of my pride that just won't allow me to accept help unless I see it doing something good for someone else.  But I know that something big happens when we carry our friends to Jesus.  Something bigger than any of us can do on our own.  I know that hearts are bonded when we walk through trials with a friend.  I know that relationships are deepened when I strip away my defenses enough to admit my needs.  

God designed us for relationship and some of us (ahem--you know who you are because I know I'm not the only one) like to think that we're ok on our own; that we do fine doing life and faith and relationships on our own terms.  For whatever reason, God won't let me stay in that place of solitude and independence.   

So if you're helping someone out, or offering to help out and your friend seems irritated, just know that it's not you.  It's just your friend having some rough edges ground off and sometimes that doesn't feel so good.   Thanks for the help.

Healthy Transparency

I struggle with transparency when it comes to my health.  I'm sure that might be a surprise when you read my blog because I talk about it a lot and basically puke out a ton of details.  But in real life I'm more likely to not say anything when I'm struggling.  An incident this morning really made me think about that.  I had thoracentesis yesterday and when I was relating the incident someone said, "Dawn I had no idea you were so ill."  The statement made me cringe.  And later, as I thought some more about it I cringed again for a totally different reason.   I want to be clear, her motives were pure sweetness.  She was expressing love and concern for me so I don't have a problem with her AT ALL.  

Reason number one that I cringed.  I don't want to be defined as ill.  That definition makes me feel weak.  It makes me feel like I am an illness rather than a person with a chronic health condition.  See, I even did it there.  I have a "chronic health condition" not an illness.  Hmm.  So what's my issue?  I don't look at other people who are ill and think they're weak. (unless they're whiny)  I wasn't ever treated differently as a kid by my parents because of my health issues.  I wasn't coddled or told to buck up.  It was just something they walked through with me.  So why does this bug me so much?  Why do I hate it when people ask me how I'm feeling or basically give me any extra attention because of my health?  I really don't know.

Maybe the real answer comes in the second reason I cringed.  As I thought about the conversation later I felt...are you ready for this...PROUD.  Yep, I was proud that she didn't know because that meant that I handled my stuff with strength and grace and stoicism.  And that made me sick.  (not ill, but nauseated at how messed up my thoughts can be)  Why did I make this into a measuring rod that tells me how well I handle my challenges?  Why did I feel like I was winning some unspecified competition by my ability to hide my chronic illness.  

I never want to be the person that people want to escape from at parties.  The one who goes on and on about health issues and whines and complains and seeks attention and sympathy.  I really think that's an ok goal.  However, God has brought me through a lot of crap and continues to do so on a daily basis.  Every time I hide it, I hide the amazing testimony of His love, His strength, His healing, His grace in my life.  That makes me want to cry because I know I couldn't make it through one second of this on my own.  But every time I hide my struggles so that I appear strong, that's exactly what I'm trying to say.  I'm good on my own.  I've got this.  

Ask my husband, my kids, my best friends and they'll tell you that I so don't have this.  I'm so NOT good on my own.  What I want is to come to a place of healthy transparency.  The kind that doesn't make you avoid me at parties because I won't shut up about my latest procedure.  The kind that also doesn't make you want to tell everyone what a hero I am because I'm so strong as I deal with my challenges while I smile humbly in the background.  I want my life, my story to be that yeah, I deal with some crap and God gets me through it every time. I want to be honest but undramatic about what I'm facing.  I want to ask for prayer without feeling stupid because I'm asking for prayer AGAIN.  I want my story to be that I would be a mess of anxiety and pain if I didn't cling to the One who knows exactly what is going on and holds my future in His hands.  I want to live and laugh and love as I honestly deal with the challenges life brings my way.  

Do you ever feel this way?  Like you're hiding what God's doing in your life and you can't figure out why?  Pray with me as I work to be transparent in a healthy way so that God gets all of the glory he deserves.  

Giving it to God, part 4

This is part 4 of a 4 part series.  To read part 1, click here.  To read part 2, click here.  To read part 3, click here. 

Around the same time that I was learning to focus on my blessings instead of the negatives, I also found a new neurologist who specialized in headaches.  He was able to see that I was having 3 different kinds of headaches and found a medication that actually gave me headache free days instead of headache free hours.  It has fewer side effects too.  All in all I was feeling better, exercising regularly, things were looking up.  Best of all my anger at God was gone and I was again growing in relationship with him.  I had a few months of things going really well.  My echo-cardiogram was good so my cardiologist said we could skip my yearly MRI, we went on vacation and got to see family, and I went to my first National Marfan Foundation Conference.   After hearing again the risks and the necessity for monitoring at the conference, I called my cardiologist and requested that we do the MRI.  My headaches also started ramping up again and I noticed that my endurance as I exercised wasn't as good as it had been a few months before.  I thought that the many hours in the car had been too much and I just needed some recovery time.  

I was so anxious as my MRI came closer.  I normally have some anxiety, but they are routine so I don't know why it seemed worse this time.  As they did the test I knew they had found something because they took more time than usual and injected the contrast an extra time.  The results did show a pleural effusion and the radiologist wondered if one of the cysts from my Dural Ectasia had formed a fistula with the pleural space and that's what was contributing to the fluid around the lung.   At this point, it's all speculation based on impressions from the MRI.  I'm not happy that another health challenge has cropped up.  I have referrals to 3 specialists and I'm not looking forward to another season of doctor visits and tests.  I sent an email to family to ask for prayer and I've obviously been praying a lot about it myself.  At first I was filled with anxiety and my anxiety was causing me to not listen very well to God.  I couldn't hear his assurances that he was taking care of me.  Instead I was frustrated and trying desperately not to get angry again.  I was overwhelmed with the thought of a season of poor health; it was made worse by the memory of how far from God I felt when I was so angry.  

I received a text message from my brother after asking for prayer telling me that God had revealed to him that I haven't given my health issues to God, that I still try to control things.  And you know what?  It's true.  That was from God.  I see it in my anxiety. I see it in my need to do everything I can to take care of my body.  I see it in my diet.  I see it in my exercise plan.  None of those things are bad, but it's the heart behind it.  It's the desire to control and do everything right so that things will go well. With that comes frustration when things don't go well because I have done everything right!  God had said the same thing to me earlier in the week--that I needed to just relinquish all of it to him.  I obviously hadn't listened since he told my brother.  The thing is, I love how God works.  If anyone else had said it to me it probably would have made me mad.  But when my brother told me--because of who he is in Christ, because of his humility and his love for me--I wasn't angry I just instantly thought, "Ah, he's right."   I love that God knows our relationship so well that he knew who I would receive the message from.  

So now, here is my dilemma.  I want to surrender this completely to God.  But I don't know how.  I don't know how you balance surrender with appropriate concern and responsibility.  It wouldn't honor God if I just stopped getting medical care, stopped taking care of myself.  I need to use my discernment to know when an issue needs follow up and when I can let it go.  But I want to let it stop with that rather than going beyond that to taking control and responsibility on my own.  I am praying and I know that God will show me how to give this to him, even if I have to do it daily for a while.  

Giving it to God, part 3

This is part 3 of a 4 part series.  To read part 1, click here .  To read part 2, click here.

As much as I wanted to give up the idol I had made of my health and focus on God alone, it felt unattainable.  As weeks turned into months--and eventually I hit the one year anniversary of my constant headache--my weariness, fear and pain turned into anger.  The invitation to come closer seemed to be something I couldn't accept.  I wanted to, but the realization that God could heal me, he could take it all away in an instant if he wanted to, was more than I could handle.  I knew he had heard me crying out and begging for him to take this away, I knew he had seen my tears and my struggles and my fear and he wasn't fixing it.  I knew there was nowhere I could go to get away from God, (see Psalm 139:1-18) but my anger made me want to walk away from him.  I was giving my life to follow him; we had left our home in Washington, my husband had left his corporate job for full time ministry, we were living 1200 miles away from our families and friends and the return on all of that obedience was worsening health and constant pain.  I know that God owes me nothing.  I know that God made the ultimate sacrifice when he sent his son and sacrificed him for our sins. I know that scripture promises that God will never leave us or forsake us. But the knowing didn't change my feelings.  What I felt was abandonment, disregard, and total lack of concern.   And the longer I was angry the more I was sure that God wouldn't want to heal me because I wasn't showing him the reverence that he deserved.  I felt bound, held captive by this anger that I couldn't seem to let go of and the helplessness of knowing that I was the only thing keeping myself from the God that I loved more than anything.  Even on my angriest days, I still loved the Lord.  I still didn't want to try to do life without him.  I wasn't at the point of denying his existence.  But I also didn't know how to reconcile the love that I felt for God with my anger because of my lack of healing and my constant pain.  

I would like to say that I had some fantastic encounter with God that turned me around.  That somehow God showed me this divine purpose for my suffering that made every moment of pain worthwhile.  But that wasn't what happened.  Instead it was a decision.  It was as simple and as difficult as me just deciding that I couldn't go on so angry.  It was the decision to believe that God loves me more than I can ever comprehend and that if he was allowing me to be sick, I had to trust that he would use it for his glory.  So I began doing the things that I knew, the things that were the foundation of my relationship with God.  I started reading my bible, praying, participating in worship.  Most of all I started asking God to give me a new attitude.  I started asking God to heal my anger, to heal my wrong beliefs rather than my physical body.  I came to realize that God cares way more about the state of my heart (not my physical heart) than he does the state of my body.  God had been working on my healing for years and continued to invite me to look at life differently.  He asked me to develop an attitude that seeks to find the blessings instead of the problems.  As someone who leans toward being a pessimist this wasn't an easy thing.  One thing that really helped was a book that my husband gave me by Ann Voskamp called One Thousand Gifts: A Dare to Live Fully Right Where You Are.  One of the phrases she used in the book was "the beautiful ugly" which refers to finding the beauty God has blessed us with in the midst of difficulty.  As I started to list my blessings, to focus on gratitude, God began to change my heart.  He began to transform me into someone who can say that my circumstances may suck, but there are so many other things that are fantastic so I'm not going to be defined by the suckiness.  It's not a denial thing, it's not a refusal to see reality, it's choosing to believe that God really does have my best interests at heart and there is beauty in this life if I open my eyes to see it.  

Giving it to God, part 2

This is part 2 in a 4 part series.  To read Part 1, click here.

Owning my health didn't just lead me to make responsible choices, it led to major struggles with control and frustration because I never could own enough of it to fix it.  Something had to change.  

You can imagine my frustration about 4 or 5 years ago when suddenly a whole new world of challenges began. I started having severe, excruciating headaches.   As a child in 2nd grade I had been sick for 2 months with headaches that were so bad that I couldn't get out of bed.  I was ok if I was lying down, as soon as I stood up the headache came back.  They never were able to determine a cause and eventually it resolved.  Except for migraines it was a onetime occurrence.  After a solid week of constant headache, I went to the doctor.  After a few weeks with no relief they referred me to an ENT (Ear, Nose and Throat specialist) who couldn't find anything wrong.  After more time with no relief, I was referred to a neurologist.  An MRI showed Chiari Malformation so they sent me to a neurosurgeon who did more MRI's and found that my dural ectasia was severe so they couldn't treat the chiari malformation surgically.  I left with an answer of "we really have no idea what to do for you.  Just go live your life."  The neurologist tried medications which offered some relief and lots of side effects, but at least I could function.  I switched to UCSD and still the neurology department didn't really know what to do with me.  I researched on my own, I changed my diet, I adjusted my activity level, and some of it provided some relief, but nothing healed me.  

In the midst of all of this I cried out to God over and over.   I asked everyone close to me to pray.  I asked God to show me if there was some sin in my life that was causing this.  I wanted to make myself right, I wanted to fix this.  If I was blocking God's healing in my life I wanted to know and take care of it.  I confessed my lack of faith; I confessed that I knew God could heal me I just wasn't sure that he wanted to. Time went on and pain became my constant companion.   I argued with God, I was working at a church and homeschooling my kids--both things I felt God had called me to do--so how could I really be effective for him if I hurt all the time.  How could my life be a testimony if I was frustrated and exhausted and needed to lie down?  I could do so much more if he would just make me well!  I had a plan!  Why wasn't he getting on with it?

One day, as I was driving to work I was listening to tobyMac's song Made to Love You and singing along at the top of my lungs because it was one of my favorite songs.  I got to the part where it says "anything, I would give up for you, everything, I give it all away" and as I sang it, I heard a voice say very clearly "even your health?"  I was alone in my car and it wasn't an audible voice but it was loud and clear and it was a voice I knew to be God's.  Shaken, I pulled my car over to the side of the road and just sat there.   God asked me again, "Even your health?  Would you give up your health for me?"  I was stunned.  I knew God wasn't literally saying he was going to make me sick.  I want to be clear on that, I don't believe that God caused my health issues.  But I knew that God was asking me to give up the idol that I had made of my health.  My health was on this high pedestal, it was the unattainable that I was willing to change everything to achieve.  I could readily give up money, fashion, a house, but God knew that my idol was being healthy and he knew that spiritually, that wasn't good for me.  I was able to justify this idol by saying that I was being a good steward.  God said that my body was a temple of the Holy Spirit, so it was honoring God to want to make my temple the best it could be.  He was inviting me to come back to Him and Him alone, forsaking all my idols.  Could I do that for him?  Could I accept whatever came my way with my health and still honor and glorify God with my life?  Could I be sick well?  Could I live without grumbling and complaining?  Could I be joy-filled and pain-filled at the same time?  It was an invitation I wanted to accept.  It was the invitation to come closer to my savior and allow him to be enough, even as my body broke down.  But I knew it wouldn't be easy.