Today was one of the those rare days when I didn’t want to do it anymore.

 I didn’t want to be sick anymore.  I didn’t want to have to wonder if I was going to be able to sing on Sunday because I’ve been coughing so much.  I didn’t want to feel like the perpetually sick girl in the back of class anymore.  I didn’t want to wonder how many more of these holidays I have left to spend with my family and friends.  I didn’t want to think about how I may never have kids or a family of my own.  And as the song ‘God gave me you’ came on the radio, I didn’t want to ask God again why I didn’t have a ‘you’.  I didn’t want to think of the meds I still had to do or the recurrent P. aeruginosa infection in my lungs.  

I didn’t want to do it anymore.  But as I pulled into my apartment complex, I was reminded that God is God and I am not.  The snow falling outside my windows speaks of a God who is not only sovereign but merciful.  The people who decorated the church for Christmas tonight speak of Christ’s love for His people.  The kids I had the privilege to chase around the church tonight show me the power of  a child-like faith and the love a parent has for a child.  The worship director who works so very hard to make everything flow well and allow people to worship on Sunday mornings speaks to the power of our God to strengthen His people.  The music coming from my speakers sings of a God who loves, disciplines, and strengthens his children.

He loves me.  He loved me enough to die a cruel death on a cross, he loves me like a daughter and always will.

He allows me to go through things in life to make me a stronger person, to minister to others and to bring his light to this broken world.  My CF is both my greatest witness tool and Satan’s greatest sword.  But I will not let him take hold in my life.  Not today.  Not ever.  This may be one of the hard days, but I will keep on keeping on.  I will keep on fighting.  I will look to Him who gives me strength every day and I will face every challenge with the God of Heaven by my side.  And I will be forever thankful for the people He has placed around me who continue to amaze me with their outpouring of grace, mercy and love into my life.  Thank you for helping me fight every day and for encouraging me when I am down and showing me Christ in everything that you do.  I can’t ever say thank you enough.

I struggle to find the balance on this page with honesty and encouragement, CF and science, struggles and joys, happiness and brokenness.  Today is one of the honest-struggle-brokenness-linked with CF posts.  You have been warned.

I had a long time to think on my drive home last weekend – close to 10 hours, to be exact.  And these were a few things I thought about.

Visibility:

I’ve often felt invisible in large groups of people.  I am not the first to be noticed, unless I cough (and then people move away from me or ask if I’m always sick).  I am not the first to strike up a conversation with people I don’t know.  They generally don’t start up conversations with me either.  I don’t often have an alcoholic beverage in my hand, which makes me part of the minority.  I often feel like I am not being seen.  Even within groups of old friends, such as this weekend, I did not feel seen.  Especially when the men sitting on either side of me were so vocal with who they thought looked hot or wore the shortest skirt (direct quote: “Now there’s a beautiful woman.”).   I felt like I was being looked through, invisible.   And, it hurt, especially coming from my friends, who didn’t even notice me.

Notice:

Consequent to those and other comments from my friends, it got me thinking.  What does it take to get noticed, even in a room full of Christian men?  Is it the short skirts, the blonde hair, the blue eyes, the dazzling smile?  The flirtatious attitudes or the low-cut tops?  What does it take to get a smile or a wave, someone to tell you that you look nice?  Perhaps it is just me (although I doubt it) but I think that all women need to be told that they are beautiful (especially when they don’t think they are).

But is what I look like what I want to be noticed for?  That may be the first thing many men people see, but there’s more to me than how I look on the outside.  On the inside, I am broken and a sinner, but I have been saved.  I am insecure, but God is my security.  I am exhausted, but God is my strength.  I am self-conscious, I don’t like people to talk about what they think I’ve done or how great it is.  I am lonely.  I am not shaken by whatever comes my way, on the outside.  On the inside I am falling apart.  On the inside I need to be glued back together, but outwardly I look like i have it all together.  Yes, I am complicated, but I am so much more than you see on the outside,.

I have been listening to a song non-stop for most of this post, and I think now is a good time to share it with you.

I’ve had a lot come my way through fire and pouring rain, and I have not let it shake me.  I have not been shaken by my CF, its challenges and difficulties, in fact God has used it for so much good that I can’t see my life any other way.  And yet, a little thing like being noticed has knocked me off my unshakable foundation for a bit.  God is my rock, I trust in Him.  I know his timing is best, I know that He holds me in His plan.  I know that whatever tomorrow brings, I will praise Him.

So what do we do about this world, about needing to be loved, seen, noticed?  Do we wear the short skirts, low tops, dye our hair?  Do we flirt and act like someone we’re not?  Do we hide our true feelings, our vulnerability?  I think part of the answer lies in how we see ourselves.

When I look into the mirror, I don’t see beautiful.  I don’t see strong, confident, or fearless.  I don’t see unshakable.  I don’t see what God sees.  I don’t see what I am to Him.  I don’t even see what others see.  All I see are the imperfections, the flaws, the problems.  On the really good days, i see a child of God who has been saved by grace and who is trying to live each day to the fullest.  On the mediocre days, I see a child of God who is very very flawed and in need of grace.  On the bad days, I see a mess of a person who is not worth the light of day.  On the very bad days, I see nothing.  And that’s something God and I are working on.  It’s a long process of pulling up the roots of insecurity and replacing them with the promises of God that take root.  This insecurity is brought out by others’ comments and circumstances.  This insecurity is deeply rooted.  This insecurity says that I am not good enough, that no one could love me because of my sickness.  This insecurity says that there is something wrong with me because I don’t have the things that others have.  This insecurity says that I am invisible and that I am not beautiful.

I don’t want to see myself in the mirror as the world sees me.  I want to see myself as God sees me.  What do you see on the good days, the bad days when you look in the mirror?  If you’re anything like me, pray with me that we would become women of God who see ourselves as He made us: in His image.

Lord I am broken, heal me.  Lord I am weak, strengthen me.  Lord I am lost, find me.  Lord I am a sinner, give me grace.  Oh Lord I need you.  Lord I want to see myself the way you see me.  Help me to overcome my unbelief and my insecurities and be deeply rooted in you.

When I began my graduate school career just over a year ago, I never imagined that this is where I would be today: discussing the disease that I have fought my entire life (and will continue to fight) as an outside observer.  Many scientists study aspects of disease without ever having experienced them themselves.  Many doctors treat patients without ever having had more than a simple cold.  Scientists and doctors have to distance themselves from the patient, from the disease, so that they don’t get too involved, too invested.  So that when their patient dies, they don’t feel like it was their own child.   So that when their experiments don’t work and their clinical trial fails, it doesn’t feel like a life-and-death situation.

But I have the privilege to have the unique perspective of working on the disease I have.  That means that I have had to be more vocal about why I am motivated to do what I do.  That means that I can’t hide behind empty words or simple meaningless phrases telling people that I’m okay or I just have a cold.  I have to be honest.  Yes, I know people with CF and that’s why I’m motivated to do what I do, but it’s also because I do too.  And that makes being a scientist working on CF and CFRD infinitely easier, but also infinitely more difficult too.  It means that the experiments are personal, the end goal is personal too.  The failure of an experiment is more difficult, the success of one is more elating.  But more than anything, it means that I care.

I’ve said many times before that I do what I do for others, for the generations to come, for someone else to have a better quality of life.  And I do.  But it makes being a scientist working on this more personal.  It’s hard for me to talk as an outsider about CF to my colleagues, because I’ve lived it.  It’s hard for me to separate my work from my life because I work on my life.

But I think it makes me a better scientist, a more honest person, and a more motivated woman (and therefore intimidating).  I think that God has uniquely blessed me to have CF, to be where I am right now doing what I’m doing, to be healthy enough to do what I love, to be in contact with families and friends whose lives have been affected by CF, to teach, to love, to care about so much and so many people.  I have been blessed.  🙂

Promise me you’ll always remember: You’re braver than you believe, stronger than you seem, and smarter than you think.  Promise me.

Promise me that when you don’t think you can take one more step, you’ll put one foot in front of the other.  Promise me, that when you need someone to lean on, you will.  Promise me that when life feels like it’s so bad that you can’t go on, you’ll get out of bed.  Promise me that when you don’t think you can study one more minute, you’ll shut your books and sleep.  Promise me that you won’t go through this life alone, that you’ll put your faith in God and trust HIm.  Promise me that when you think you can’t do it anymore, you’ll remember this.

You’re braver than you believe, stronger than you seem, and smarter than you think.  And you need friends like Tigger and Piglet and Pooh and Eeyore and Rabbit and Kanga and Roo.  And you need God.  Because you can’t do this alone.

What would you be willing to give up to follow God’s will for your life?  Your career, your pride, your prestige, your reputation?  We talk so much about vocation and calling, yet how many of us would actually be willing to give everything up in the face of opposition to follow God’s calling?

Last year about this time, I was starting graduate school.  My first class had a graduate student TA, and she was a wonderful TA.  I appreciated her enthusiasm for even the most dull topics, her ability to stay positive when the rest of the students were very negative.  It became clear over the course of the semester that she was a Catholic, and she wasn’t afraid to hide it.  I appreciated that as well, perhaps more so than her abilities as a TA.  After the semester ended, we lost touch over the break, but we happened to be students in the same class the next semester.  Both of us were fairly busy, but we made time to chat on the way back from class, or before class started.  The semester came to a close and we lost touch again, until we happened to meet on the elevator in the Chemistry building one day.  She was nearing the beginning of her third year, and I assumed she was preparing for her comps, and so I asked her when she was taking them.  “I’m actually defending my master’s thesis in August.  I’m leaving and I’m going to join the convent.”  We immediately set up a time to have lunch.

I was proud of my friend for following her calling even when everything around her screamed, “What are you doing?”  Over the next few weeks we talked and had lunch and freaked out together about upcoming defenses and meetings.  But all the while, there was something that drew us together that was bigger than science, bigger than classes – God was so present in all of our conversations, in our freakouts, but most especially in His plans for her life (and mine).

God bulldozed the way for her, from beginning the  application process, to telling her adviser, to explaining to her labmates why she was leaving, to keeping her respect as a scientist, to leaving behind everything she has worked for at MSU.  She was afraid of what people would think when she told them – yet God opened people’s hearts and minds to be receptive to what she said.  Even her colleagues, whom she never expected to be receptive, are planning on coming to the ceremony next week.  She stepped out in faith, and walked off a ledge, telling people why she was leaving, even though she didn’t fully understand it herself.

And so I ask you again – what would you give up to follow God’s calling?  She is giving up her career, her life, her reputation as a scientist, her security – to follow His will.  She has faith, as small as mustard seed, yet God is moving mountains through her.

I am so blessed to have known her here at MSU and I look forward to continuing our friendship while we are in different places.  My biggest regret is that we didn’t connect sooner, but there is a time for everything, a purpose for everything under the sun.

I am so thankful to have known you, and I am so proud of you for following your calling in spite of the huge leap of faith.  Thank you for being an example to so many of us, and for continuing to live out your faith in the time that you have been here.  Blessings to you.

Dayenu.

This phrase is heard most often at Jewish passover meals, and it means this: It would have been enough.

“Had He brought us out of Egypt, it would have been enough.  Had He given us the Sabbath, it would have been enough.  Had he given us the law, it would have been enough,” they sing.  Had He come as a baby, it would have been enough.  Had He died on the cross, it would have been enough.  Had He risen again, it would have been enough.  Had He ascended into heaven, it would have been enough.  Had He sent His Spirit, it would have been enough.  Had He promised to come again, it would have been enough.

As much as I love this phrase, dayenu, I think as Christians we need a new phrase: HE IS enough.  It is enough that He came, He loved, He taught, He died, arms outstretched, taking my sins as His own.  But He didn’t stop there.  He rose again.  He ascended into heaven.  He sent us His spirit.  He promised to come again.  He is our Savior.  HE IS ENOUGH.

Is He enough for you?  In the middle of what you think is the darkest valley, the worst trial, the most difficult temptation – is He enough?  Is He enough in the days when you wonder if you can take another breath?  Is He enough in the moments when you watch the door, praying someone will walk through it?  Is He enough to calm your raging seas?  Is He enough to still the waters?  Is He enough that you’ll get out of the boat and walk towards Him?  Is He enough?

He is enough.  He has calmed the seas, stilled the waters.  And but one disciple had the courage to get out of the boat.  Peter stepped out on the water.  He wasn’t perfect – he stumbled, fell, denied Christ, sinned with the best of us.  But he had the courage to get out of the boat and reach for Him who is enough for us.  Will you get out of the boat?  He is enough for you, and He is waiting for you to step out of your security and your “safe” ground, your comfort zone.  The journey will be rocky, you’re going to feel like you’re sinking.  But you have to step out of the boat.  Because He is enough.

Feeling abandoned.  Alone.  Like the world has decided that I have a target on my back.

Feeling overjoyed, hopeful, happy even.  Like maybe something could go right, if I have the courage to ask.

Feeling disappointed, let down.  Like I’m supposed to do this alone.

Feeling grateful.  Thankful.  Like somebody’s watching out for me.

All of these emotions come at once, an attack that I wasn’t expecting.  Sometimes I wish I was Vulcan, that I could suppress my emotions and appear to be unmoveable.  But then I remember that in order to have people in your life, you have to let them in.  Then I’m glad I’m not Vulcan, that I can express my emotions through words and through song, through actions.  But then I put myself out there, thinking that this time it’ll be okay.  And I get hurt.  Every time.  And I wish I was Vulcan again.

I’ve never been good at letting people in, as I’ve alluded to before.  I’m still not.  I’m afraid I’m going to get hurt, I’m afraid I’m going to hurt them.  Having CF, I’ve been conditioned to be isolated – support groups don’t exist because we can’t be in the same room with each other without extensive precautions.  I’ve been taught to go it alone, to do it myself, and to rely completely on no one but God.

Over time, “support groups” have cropped up online, chat rooms and facebook pages – but it’s not the same as being able to go out to coffee with a friend who understands what you’re going through because she’s going through it too.  It’s not the same as getting to know someone personally and feeling like you can call them up out of the blue, no matter what’s wrong.  For many CF patients, their support group becomes their family, their church, their coworkers.  But there are still times we feel like we’re alone, some of us more than others.

I think that’s the real reason that I’ve been by myself for so long – it’s programmed into me that I should do it alone, and that every time I put myself out there I get hurt, and that I should just be like a Vulcan and hide it all away.  That’s why I won’t call up the person I really want to right now, or go out of my way to find someone at church on Sunday.  Because I’m afraid that I can’t do this on my own.  That once they see the real me, they’ll go running.  That once they see how broken I am inside, but how put together I look on the outside, they’ll flee to the hills.

I need those emotions that bombarded me this week.  And I need one more (at least) to add to that list: willingness to be vulnerable rather than Vulcan.  I know it won’t happen overnight.  Or even tomorrow or the next day.  But with God’s help, I’ll take it one step at a time.

It’s amazing when God takes the pieces and puts them together into a beautiful picture, a holy offering to His name.  Our church got to experience that this morning.

Our principal piano player – on vacation.  Our back up piano player – gone.  Our back up back up piano player: me, who has never played piano for a worship service in her life.  Our principal guitar player –  gone.  Our second guitar player – here, having only played with our group once.  Our bass player – here, but with laryngitis (which he contracted on Thursday, forcing us to call in a back up vocal who had never sung with us before ).  Our cello player – here.  There’s absolutely nothing that could go wrong with this picture, nothing at all.

Add on top of that the fact that the internet at church was down, the powerpoint for the sermon was not working correctly – there was a lot that went wrong.  Before the service, one of the elders prayed for us all, that all of the things that the devil had put in our path this morning would be banished, and that He would fill this church this morning.  And He did.  He took the imperfect pieces and allowed our church to worship Him in spirit and in truth.

I’ll be the first to admit that I was nervous for this morning – I’ve never played piano for church before, but there was really no other choice.  And so, I agreed to do it.  I practiced all week, but I was still nervous for how it was going to go.  And so I asked a few trusted friends to pray for me.  Oddly enough, this morning’s message was about prayer as a weapon.  Ironic, really.  The prayers of my friends were powerful and effective.  So is the grace of the people in my church.  So many of them were kind enough to speak to me, encourage me today.  I am beyond grateful, and have been so blessed by all of you.  Thank you.

About two months ago, I spent 3 weeks on iV antibiotics, all specific to Psuedamonas aeruginosa, a common pathogen in CF.  [If the science has lost you already, keep reading.  I promise I’ll stop with the technical terms and bacteria names soon.  :)]  Just last week, I got a call from clinic with my latest culture results.  “A ton of Psuedamonas aeruginosa colonies,” she said, “and some Staphalococcus aureus colonies.”  She sounded slightly bewildered, for a number of reasons.  First, that course of IVs that I mentioned.  It was supposed to kill all of this.  Second, because my pulmonary functions were the best that this clinic has seen the day they took this culture.  By all rights and medical reasons, this infection should not be here.

So what do you do when things happen that “shouldn’t”?  What happens when things don’t go as you planned?  What happens when things like Psuedamonas aeruginosa infections come along when you don’t expect them (or want them)?

Do you run to the things of this world, to alcohol or to a person?  Do you throw a hissy fit like a two year old just to get noticed?  Do you turn on Netflix to drown out the dull roar in your own head with a drink in your hand and a heaping pile of ice cream in the bowl in front of you?  Or do you run into the open arms of Jesus, humbling yourself by asking others to pray for you, trusting that He has a plan for you, even in the difficulties and the things that don’t “work out”?

Now, I’m not saying that Netflix and ice cream (and even the occasional drink) are bad.  They’re actually really good things in moderation.  But if that is the only response you have to these situations, you are missing everything that God has for you.

Whether it is an infection, a broken relationship, a job falling through, or any number of other things, take heart in this: God has a plan, and He is still God.  He knows what we need, every hour of every day.  Trust Him completely.  When things don’t go the way you think they should, run through the valley knowing that God will bring you to the mountaintop.  The climb may be difficult.  But the view is exceptional once you get there.  Keep climbing, one step at a time.

What are you living for?