Uncertainty and impatience.

When I was in my late teens and probably even early twenties, I would have told you that my greatest fear was uncertainty.  I feared the unknown, and I feared making the wrong decisions.  The good Lord knew this about me, and so he turned my life upside down to the point that the past seven years have been almost nothing but uncertainty.  (I don't pretend to know the Lord's motives or whether my suffering was from his hands, but I do believe he has used and is using it to teach me to trust him rather than fear the unknown.) I am learning to trust him even when I can't see past today, and I'm learning to discern his voice.  To be honest, the sicker I was, the easier it was to simply trust him to get me through the day, because that's all I had and I didn't have the strength to look beyond that day.

But now, even though it's slow and nowhere near where I'd like it to be, my health is improving to the point that I'm beginning to think about the future--beyond today, beyond next month, next year.  I have a million dreams and desires, some of which I truly believe are God-given, but my body is not ready for those desires to be fulfilled right now, which only leaves me discontent and impatient.  Why hasn't he healed me yet?  Why am I still stuck where I am?

There's another side of that, though.  A part of me--knowing the roller coaster of ups and downs that this migraine journey has been--wonders if healing will ever come, if there will ever be more to life than this.  Will I ever be able to live on my own without financial help from my parents?  Will I ever be able to have a fulfilling job, doing full-time what I believe the Lord has called me to do?  Will I ever have a family of my own?  Will I ever even be able to maintain a social life and have real friends?

Right now the "Will I ever..." side is winning--winning to the point that I'm grieving the life I'm afraid I will never have.  Perhaps it's the realization that I'm still in the same place I was 2 years ago.  More likely it's being given a glimpse of hope of this one tiny aspect of "normalcy" and then having it taken away.

So often I'm optimistic regarding this season of my life (oh, how I hope it's only a season).  But some days my only response is grief, frustration.

This disease has wreaked havoc on my life in so many ways, ways that most people don't even realize.  It has completely stolen my identity.  It has severed relationships with many of my closest friends.  I haven't been on a date in over 7 years. (Meanwhile, most of my friends or used-to-be-friends-that-I-no-longer-keep-up-with are happily married with children.)  It has changed not only how others view me but how I view myself.  Not to mention all the things I can't do and places I can't go, the accommodations I'm no longer shy about asking for.  The cognitive dysfunction that's present even when I'm not in excruciating pain.  The way no one (except the people I live with and a few God-gifted souls) knows how to talk to me or act around me.  (They ask how I'm doing but don't really want an answer because that will make them feel uncomfortable and they won't know what to say next.)  Having to live with my parents when I'm getting closer to 30 years old every day because I can't maintain a job that pays enough for me to be able to afford living on my own.  Meanwhile, getting reprimanded at the job I do have (and am truly grateful for because it is exactly what I need right now even if it isn't the type of job I want) because I can't work as efficiently as a healthy person could, even with getting to work early and staying late as often as I possibly can.

As my doctor so adequately put it at a recent appointment, "For a long time, you have not been Kaci; you have been a migraine with Kaci hidden in there somewhere." 

That pretty much sums up how I feel.  I want to be Kaci again.  The last time I didn't have a constant migraine, I was 16 years old.  The last time that migraine didn't control every aspect of my life, I was 20; I'll be 28 next month.

Holy Father, I lay my life in your hands.  I had placed it there before, but lately I've been trying to pick pieces of it back up again, foolishly thinking I can do something good with them.  Forgive me, and I know my weaknesses and know I will keep picking pieces of it back up again and again, but each time, Lord, gently remind me that you can do far more with my feeble life than I ever can.  Tune my heart to your voice and your voice alone.  Drown out the enemy's lies.  Help me to be content in every moment and in every aspect of my life.  Help me not to compare my life to others' or to some fairy tale idea of what I dreamed my life would be like.  Above all else, Father, use my life to bring you glory, whatever that may look like.  I do mean that wholeheartedly, but it's also a difficult prayer to pray because the way you choose to bring glory to yourself may not involve the things my flesh wants.  Your word tells me that if I delight myself in you, you will give me the desires of my heart.  That is my prayer.  Become my full delight, so much so that my desires for my life are transformed into the desires you have for my life.

Be still, my heart.

I got the opportunity to go to Tegucigalpa, Honduras, this summer and help with what POI is doing there; but let's be honest, the real reason I went was to be able to meet this precious little girl who has won my heart even though I have never heard her voice or touched her little hands.

I began sponsoring little Keisi in March of 2014.  She was 6 years old then, and the only reason I chose her was because she and I had the same name.  I didn't know what a precious soul she was and kind heart she had.  I have enjoyed loving on her from a distance, but meeting her in person was one of the greatest blessings I have ever received.

Keisi is very shy.  In fact, several months ago, POI did video interviews with the children and sent them to their sponsors.  Keisi was too timid to even talk to the camera; she just gave me a little wave, so I was kind of nervous about how she would respond to meeting me.

The first full day we were in Tegucigalpa, I was assigned to do recreation for VBS in Keisi's neighborhood.  (The person who made assignments had no idea my sponsored child was in that neighborhood; it was totally a God thing.)  Early in the morning, Mrs. Ruth found her and brought her to meet me.  As you can see, she was very reserved at first.

Then I introduced myself in Spanish that was probably full of mistakes, but she seemed to forgive each and every one of them, and I showed her that I was wearing a bracelet she had made for me and written her name on with the help of one of the groups who took a trip to Tegucigalpa over spring break.

Seeing me wearing the bracelet she had made for me made her little face light up and she decided she could talk to me a little.  She said she had a photo of me, so I told her that I had photos of her too, and I showed her that the background of my phone was her picture.  Upon seeing her picture on my phone, first she smiled this huge smile and then, this timid little girl reached over, unprompted, and gave me the biggest, most heart-melting hug I have ever received.  I truly can't imagine a more meaningful hug.  I could have melted into a puddle right then and there.

 

Keisi went home that day and told her mother that I was at the POI center, so the next day her mother came to meet me, and she thanked me for all I'm doing for her little girl.  She said that Keisi takes very good care of all the gifts I have sent her (In fact, the sandals Keisi wore all week were some I had sent her with a spring break group.) and that she talks about me even though she had never met me.  Keisi's mother also let me know (when I asked if they had any specific needs) that she and her 5 young children are sleeping on the floor.  Praise God that through POI, I am able to help meet that need and little Keisi will no longer have to spend her nights sleeping on a concrete floor.  So now I have not only made a connection with this 7-year-old girl but with her mother as well.  That was truly a humbling experience.

My eyes brim with tears as I think of the impact that this tiny girl has made on my life when it was I who set out to make an impact on hers.  By the last day we spent together, she came and found me, grabbed my hand, and said, "Vamos!" (Come on!) as if we had been best friends for years.

I now keep the following photo as the background on my phone.  It's from that last day, and Keisi's countenance is so different from the moment we first met.  We are friends now; we are family.  I am her madrina (godmother), and she is my ahijada (goddaughter).  This face is the face of a child who feels loved.

I hope and pray that the Lord gives me the opportunity to wrap my arms around this baby girl again and again and again.  Thank you, POI, for giving me this amazing opportunity.

Small victories.

I said my earlier post was yesterday's prompt, but then I realized I'm two days behind.  This is actually yesterday's prompt: What small thing gives you hope for living with Migraine?

After 11 years of trying all sorts of medications (I stopped counting in 2012 when the number was close to 40.), acupuncture, crazy diets, nerve blocks, Botox, a TENS unit, two inpatient hospital stays, two outpatient infusions, and two surgeries, all with no improvement, it can get frustrating.

But I cling to the small victories; I celebrate them.  A win is a win, no matter how small.  My victories are things other people take for granted, like being able to go to a movie (even if I have to wear earplugs), getting to have dinner with a friend, being able to clean my room, staying on my laptop for more than 10 minutes without feeling nauseated, going an entire week without missing work, even being able to watch an entire movie on TV.

Those things always boost my spirits and give me hope that one day migraine won't control my life anymore.  My hope will not be shaken.

Source of hope.

Today's (actually yesterday's) MHAM prompt: Who helps you hope?  Which person in your life has helped you most to hold on to hope despite your Migraine disease?

This is a tough one.  There are many people in my life who have supported me on this journey.  I'm thankful for every single one of their prayers and kind words, but they are not the source of my hope.

Jesus Christ is the source of my hope.  

Someone recently told me I had the biggest faith of anyone she knew.  Her statement was encouraging, but what I didn't tell her is that if my faith were even an ounce smaller, I would fall apart.  I would let Migraine and depression take control of my life.  My faith and hope in Christ is what sustains me.  It's not a matter of striving for righteousness, although that's always my goal as a daughter of Christ; it's a matter of survival.

Hope.

Each year during the month of June, the American Headache & Migraine Association has a Migraine and Headache Awareness Month blogging challenge.  They post different writing prompts every day for the entire month.  I missed yesterday because I just remembered about it today, so I'm going to do yesterday's post and then today's. 

Prompt for June 1:  What is your favorite quote about hope and how does it apply to your Migraines?

This quote isn't directly related to hope, but it's a quote that gives me hope.

C. S. Lewis once said, "Hardship often prepares an ordinary person for an extraordinary destiny."

The Lord is using my chronic illness to prepare me for something extraordinary.  He's molding my heart, strengthening my soul.  He's teaching me to fully rely on him, to love others unconditionally, to be compassionate. All traits I was missing before my life got turned upside down by chronic migraine.

I have lots of big dreams, some of which I believe come directly from the Lord.  There's no way I can make those dreams reality right now, but He's in control.  I firmly believe that He's going to use me in extraordinary ways to bring glory to Himself.  And that's what keeps me going.

A mile in my shoes.

June is Migraine Awareness Month.  I don't normally participate in these types of things, and the last thing I want to talk about is my health, but lately I've connected with several other migraineurs (not migraine sufferers, not migraine patients; those make us sound like victims) and have realized that our stories need to be shared.  Migraine disease (Yes, it's a disease. If you don't have the disease, you don't get migraines.) is vastly misunderstood.  It's not even understood by doctors.  The research budget for it is pennies per patient even though it affects 13 percent of the U. S. population; that's more than 37 million people in the U. S. alone.  Some of those people only get one or two migraines a year, while 2-3 million have migraines more than half of the time.  Then there are the "lucky" few like me, who have attacks daily.

Living with migraine sometimes feels like you're trapped in your own body.  It's an invisible illness, so nobody can look at you and know that you're in excruciating pain, on the verge of throwing up, and have blurred vision, among other things.  When I see someone I haven't seen in several years, they ask, "How are you?" meaning in regard to my health.  Of course, I answer with "I'm good," even though I want to say, "I've missed work and was bedridden 5 days in the past 2 1/2 weeks.  I take over 20 pills every day just to function.  My head feels like it's going to explode.  Having to be in a crowded room is agonizing.  Just talking makes me want to throw up.  Your perfume reeks.  Since you hugged me, the smell of it is going to linger in my hair for the rest of the day, which will make the migraine I already have become debilitating.  You think you're talking at a normal pitch, but to my migraine ears, it sounds like you're yelling.  I'm totally faking it right now, so can I please stop smiling and go sit down by myself?"  After I tell them I'm good, which they blindly accept as truth, they tell me, "You look good."  Dear, I look the same whether I'm having the worst migraine of my life or am feeling fantastic.  Migraine doesn't change the way I look.  Except that I've gained 60 pounds from medication side effects and not being unable to do anything except sit on the couch or lie in bed.  But thanks...  I guess...

But migraine has also robbed me of so many things.  Social life?  Forget it.  Romantic relationships?  That's a joke.  I haven't been on a single date since my migraines became debilitating 8 years ago.  I failed out of architecture school my junior year of college after being at the top of my class the first two years.  I had a school district official essentially tell me I should quit my job as a high school teacher because I was missing too many days.  That was the day I quit and moved back in with my parents.

Day-to-day life with migraine is challenging as well.  I have a constant headache, but I have to be super careful not to do anything to make it worse or I'll be out of commission for at least one day and up to three following.  I can't watch TV in a dark room and sometimes can't watch TV at all.  I can't go to the movies.  I have to make sure I eat consistently; a late lunch is not an option.  I can't go outside much because both heat and cold trigger migraines.  Even washing my hands in the winter can make my body too cold and trigger a migraine.  I have to go to bed at the same time every night because too much or too little sleep will trigger an attack.  No perfume or scented lotion.  No candles.  No loud places.  I even wear earplugs in church.  No multitasking, like being on the computer while the TV is on.  Really I can't stay on my laptop for very long at all before I start feeling nauseated.  Can't do anything that gets my heart rate up.  And the list goes on and on.

This just barely scratches the surface.  But migraine is much more than just a bad headache, which is what most people believe.  It's a complex neurological disease with many symptoms; headache is just the most prominent.  It's genetic.  In fact, because I carry the gene, I have a 50 percent chance of passing it on to my children if I ever have them.  If my husband and I both have migraine in our family history, our children would have a 90 percent chance of having the disease.

I'm not writing this for you to feel sorry for me.  I don't want pity. I've accepted that this is my journey, and I fully believe that God is using it to change me and strengthen me.  I just want people to be educated and for the stigma surrounding migraine to be lessened. 

Daughter of God.

Identity is a fragile concept.  As a woman, I've lived my life constantly comparing myself to other women--as far back as some of my earliest memories.  She's thinner than I am.  She's smarter than I am.  She gets more attention from boys than I do.  Oh, and then there's the attention from the opposite sex that competes for my identity.  Am I pretty enough?  Am I feminine enough?  Am I too independent?

This just barely scratches the surface of the hits my identity has taken as a woman.  It's a constant onslaught of pressures to please and compare, to measure up to a bar that's constantly moving out of reach.

Growing up in church and being a part of Christian women's groups in particular, I've heard my fair share of finding-your-identity-in-Christ talks, but the pressures from the world were always louder.  I thought my identity was in Christ--I mean, I was a Christian, right--but I constantly struggled with insecurity and comparison.

I don't know what finally flipped that switch for me.  Perhaps it's been just growing up.  Perhaps it's been having my whole world shaken so that the surface-level things no longer mattered.  I don't know.  But I can now truly say that my identity is in Christ.  There is a freedom and security that comes from that, that is nearly indescribable.  For the first time in my life I like who I am.  I don't have to find my worth in anything but my Father, and He says I am fearfully and wonderfully made.  He delights in me.  Nothing I can do will change His feelings for me.

Finding my identity in Christ frees me to not only love myself, but to love other people.  I don't have to worry about what other people think, because their opinions don't define me anymore.  I no longer have to hide who I am or try to be someone else, because I know my personality and my passions come from my Father, and I am striving daily to be more like Him.  He is who I want look like and who I want to please.

Glimpses.

I often get frustrated with my limitations and my weaknesses.  I've cried out to God on many occasions, begging to know WHY--Lord, couldn't I do so much more for you if I didn't have these chains holding me back, if I were free, if I were whole?

Every time, He's gently reassured me that He is sovereign and that He sees the big picture.  He takes my hand in His and whispers, Daughter, for this moment in time, you can bring me more glory through suffering well than through being healed.  Trust me.  Believe me.

I trust His words wholeheartedly, and His words alone would be enough if that's all He ever gave me. But recently He's chosen to give me glimpses into some of the ways He's using my suffering to bring glory to Himself and to speak into the lives of others.  It's been truly humbling to see and hear of others moved by my faith and my story, because I know that there is nothing good in me other than Him and that I would have lost all hope long ago if He had not sustained me.

Through these tiny glimpses, God is breathing life into me just as He did to Adam in the garden.  He's renewing me.  He's giving me strength to continue to suffer well, even when I don't know what tomorrow holds.  He's saying, Well done, My Child.  Keep striving.  Keep trusting Me.

Community.

Having a chronic illness can be very isolating.  I know people love me and care about me, but my limitations make it difficult to maintain friendships and I tend to keep people at arm's length a lot of times because I don't want them to really see what's inside and decide it's too much for them (This has happened before.)

Last night I felt good enough to go to my growth group; I've missed the past several weeks.  There were only five of us there and these sweet ladies all started genuinely asking how I've been.  For some reason, I went with the real, honest, raw truth this time.  I shared my frustrations and my fears.  I cried.  They cried.  I can't remember the last time I felt so loved or felt so safe.  There is nothing they can physically do to make my life any less challenging right now, but just allowing them to share that emotional burden felt like a weight was lifted off my shoulders.  And now I know I have a deeper connection with each of those four ladies because I've trusted them with a piece of my heart.

God calls us to live in community, but I don't think I had ever seen the fullness of what that meant for me until last night in that cozy living room with those dear friends.

Ladies, if ever you happen to read this, thank you for allowing God's love to flow through you.  Thank you for making me feel safe enough to be vulnerable.  I've been pondering your kind words all day.  You are beautiful souls, and I'm blessed to know you.

Who I am.

In a recent Internet search for any type of therapy I haven't tried (no luck), I came across a long-time chronic migraine sufferer (although I hate to use that word, sufferer; what's better, patient?) who said, "This illness isn't who I am."  She was very adamant about it, and it was like a huge life-changing epiphany she'd had.

That statement was true for me for the first 4-5 years with migraines, before they started to take over every aspect of my life.  Everyone who knew me didn't know I had a chronic illness.  I was still in control.

But then the migraine took over.  I didn't get to choose anymore.  Friends stopped inviting me to things because I was "the sick kid".  People whose names I didn't even know told me they were praying for me.  It wasn't that I was gone; I was still there, but the me people saw was shrouded by migraine.

Now, eleven years into this journey, when I meet new people (which is rare because of my limitations), I get excited about the prospect of being just Kaci, because they don't know, but migraine has become so ingrained into who I am that all it takes is one question or one missed social obligation and it's out there; I'm now migraine Kaci again.

I don't miss the just Kaci of eleven years ago.  She was young and dumb and entitled.  But I kind of like 27-year-old just Kaci, and I wish more people knew her. 

They say that if you want to see who a person truly is, watch them go through something hard.  The past 6 years has been my hard.  And it's allowed me to see who I really am.  I've grown tremendously.  But it's also created this shell around me--part coping mechanism, part stigma, part good-intentioned compassion--so that very few people ever see past the migraine surface.  Even close friends become afraid to get too close.

Sadly, my illness does define me in the eyes of most people who know me.  There's no way around it.  But through it all, He's making me into a better just Kaci, and if it's for no other purpose than to glorify Him, then that's okay.  He sees through the shell.

Death of dreams.

From the time I was a little girl, I've had dreams for my life--some of them small and insignificant, some lofty and grand, some selfish, some noble.  The details of those dreams have changed as I've matured and life has led me in various directions, but the ones dearest to my heart have remained intact.  During my weakest moments, I turn to those dreams and strengthen my feeble grip on them as if somehow they can sustain me.  Somewhere along the way, I got it in my head that those must be God's dreams for me too.

Then a few days ago--I can't even remember who I was talking to or what she said--but her words triggered this weighty realization that the dream I have held most tightly to for as long as I can remember may be the one dream I have to let go of.  If God heals me, then that dream is a possibility, but He may never choose to heal me; and if he doesn't, then I will likely have to let that cherished dream fall through my fingers.

I grieved over that reality.  I wept over the death of the life I always thought I would have.

But then I did the scariest thing I have ever done: I surrendered.  I opened my clenched fists that had been protecting those sacred dreams and emptied them before my Father.  What I could do with those dreams on my best day would be like the mud pies a child offers his mother.  I don't want to offer God mud pies because I'm selfishly holding on to childish dreams.  My prayer in that moment became, Father, do in my life whatever brings you the most glory.

All of the dreams I cherished were good things, but I never want my quest for good to hinder God's plans for best.  Getting to be a part of bringing Him glory will bring me more joy than any of those tiny dreams ever could.

Whispers.

As this constant companion of a headache has returned in the last couple months, so have the enemy's whispers:  You're worthless.  You can't do it.  You'll never finish school.  You'll never have a fulfilling job.  You'll never know the companionship of a husband or the love of a child.  How dare you dream when you can't even manage to spend an afternoon out of bed?

Sometimes those whispers grow until they're deafening.  It's hard not to believe them when I'm so helpless to stop the constant pain.

In the moments the whispers become screams, all I can do is cry out in desperation.  I don't know what to pray.  I have no words.  But then the unmistakable voice of my Father breaks through the cacophony, in a whisper so small yet so crystal clear, it drowns out all others: Daughter, you are fearfully and wonderfully made. This body of yours is my masterpiece.  You're not a mistake.  You're my child, and I want only good things for you.  Dearest, I have not healed you yet, but only because I have something better in store.  Just wait.  Trust me.  Believe me.

Faith in the silence.

In Psalm 69, David is crying out to God in desperation.  He says, "I'm in over my head" (v. 1), and later, "I'm hoarse from calling for help, bleary-eyed from searching the sky for God" (v. 3).  In verse 6, though, he switches his focus: "Don't let those who look to you in hope be discouraged by what happens to me, dear Lord!  God of the armies!  Don't let those out looking for you come to a dead end by following me--Please, dear God of Israel!"

David is concerned about how his unanswered prayer is affecting the faith of those who look to him.  I don't think David is trying to manipulate God here.  He's wise enough to know that would be fruitless.  I think David is asking God to protect the hearts of those whose faith is vulnerable, but more than that, I think he is asking God to increase his own faith and change his perspective so that others are strengthened in the Lord by his reactions. 

Think of Paul.  He went through some dark times, and God didn't always immediately rescue him from his trials, but his perspective was such that God is using him even today to minister to people.  Some of Paul's most influential words were written from a jail cell.

How is the faith of others affected when God seems to be silent in regards to your difficulties?  Do they look to you and say, "Oh, she's been praying, and she's still in that place, so God must not care"?  Or is their response, "How does she endure with such faith and joy?  That has to come from a supernatural place!"?

Dear friend, God's answer isn't always to change our circumstances.  Sometimes the most profound rescue is when He changes our hearts.