Married to Someone with Lupus

I have lupus. My husband does not. Lupus affects both of us.

 I've mentioned my husband, Daniel, in my blog posts before. He has been an amazing pillar of strength for me. So for Lupus Awareness Month–and my penultimate A Room With Books and Music blog post—I thought I'd let him share his perspective on life with lupus.

How did you feel when you found out your wife has lupus?

At the time, as hard as it was hard to hear it, it was a relief to know that she wasn't imminently dying. We knew there would still be uncertainty as we moved forward from the diagnosis, but it was a trememndous sense of relief just to know what we were dealing with. It's hard to put into words how frightened and helpless we felt before we knew why she was so sick.

How does being married with someone with lupus affect your daily life?

It makes the impact of my decisions a lot more real. If I watch a movie instead of doing chores, it can derail her for a week. I have to be more intentional about when I work and when I relax, so that we can both really relax. It also means I can't make as many time commitments as I used to. Even if Esther isn't involved in the activity, it can be hard on her if I'm not around to help when she needs it, especially if she's having a flare up.

What has been your biggest challenge being married to someone with lupus?

I work full time and I'm pursuing a Masters degree part time. So balancing time between work, school, and home is definitely a challenge. I've had to really slow down the pace of my studies. And social activities with our friends are really kind of a luxury. We've both had a history of being over-involved with things, so we both had to learn how to dial it way down and help Esther conserve her "spoons."

What has helped you get through hard times?

Friends. Our faith community. People who have been there to encourage us and bring food to us and pray for us when we haven't even had the heart or strength to pray for ourselves anymore. I thank God for His people that He's surrounded us with. Our church family, my classmates and teachers, our coworkers, all of them have been amazing. I don't know how we would have made it through those first several months if it wasn't for them and their understanding.

Pictures of Lupus, Opus 6

I got 2 cortisone injections in my hand today...again. It's easy to get frustrated when symptoms of lupus persist, but there are far better things—wonderfully beautiful things—to set my mind on. "We do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen." {2 Corinthians 4:16-18}

Ten Looks at Christ

I recently started a new journey in my walk with God. I decided to get a Give Me Jesus journal from Life Lived Beautifully. (You can check it out the one I got here. There is also a men's/unisex version here.) The journal is designed to bring structure to your "quiet time" with God. I'm a very organized person, but when I spend time alone with God, I feel scattered. As much as I want to give God my focus, it is a struggle. So when I saw this journal, I was on board. The first few pages has introspective questions to fill out to and gives you some guidance for how to go about having a daily time with God. I've been a Christian since I was little and even went to Bible college, so I thought that filling out these questions would be a piece of cake. But they made me really evaluate where I am - where I truly am in my relationship with God. There was one page in particular that really struck me...

Based on a a saying by Robert McCheyne ("For every look at self, take ten looks at Christ!), this particular page gave a challenge:

"We must redirect our gaze to Jesus throughout the day. Take time to write down your 'ten looks' you will take at Jesus." 

When I read these words, I felt my breath stop for a moment. Write down the ten looks I will take at Jesus? I know the things He said, things He did, and how the Bible says to live. But do I know Jesus well enough that I can articulate ten things about Him that I can look at? Off the top of my head, I drew a blank. I was overwhelmed and at a loss. So I sat for a while in the realization that after so many years of living for God, I knew much about what He had done for me, but I did not know as much about HIM as I had thought. I began to flip through my Bible and look at passages that I had highlighted, searching for glimpses of Jesus...

1.  "...Then he rose and rebuked the winds and the sea, and there was a great calm...even the winds and the sea obey him..." (Matthew 8:26-27)

2. "...But take heart; I have overcome the world." (John 16:33)

3. "And the Word became flesh and dwelt among us, and we have seen his glory, glory as the only son from the Father, full of grace and truth." (John 1:14)

4. "But God shows his love for us in that while we were still sinners, Christ died for us." (Romans 5:8)

5. "He is the image of the invisible God..." (Colossians 1:15)

6. "And he is before all things, and in him all things hold together." (Colossians1:17)

7. "If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God." (Colossians 3:1)

8. "He is the radiance of the glory of God and the exact imprint of his nature, and he upholds the universe by the word of his power." (Hebrews 1:3)

9. "the founder and perfecter of our faith" (Hebrews 12:2)

10. Great and amazing are your deeds, O Lord God the Almighty! Just and true are your ways, O King of the nations!...You alone are holy..." (Revelation 15:3-4)

I keep this journal on my nightstand open to this page (with my phone far away, charging in the living room). So in the morning when my alarm clock goes off, before I have had time to dwell on the pain and stiffness that lupus brought my body through the night, before I start counting the items on my to-do list, and before social media has flooded my mind with so many useless and dramatic things, I grab this journal and take ten looks at Christ.

My Favorite Moment

My first post-lupus-diagnosis piano recital was earlier this week. It was everything I wanted it to be. One person later told me, "You kicked lupus in the butt!" My arthritic fingers made the sounds and colors I wanted. My mind never stopped even when I felt lupus fog clouding my memory. And to add to the excitement, the room was full of such wonderful energy from people who weathered the rain to be there. In that one night, my heart became full with so many victories, sweet words, and memories I will cherish for a long time. But there is one moment from that night that stands out above all the rest.

Before the recital...

After I finished warming up, I had a few minutes before the doors to the recital hall opened for people to find their seats. I was alone in the hall. It was just me and God. I began to play some hymns. No thought of technique. No thought of memory work. No thought of what people may think or trying to impress anyone. Just worship. Pure, unfiltered worship. I was completely free. God has given me so much. I wouldn't be able to play the piano or perform if it wasn't for Him. It was only right that my first performance that night was for Him and Him alone.

 

Integrity

Integrity.

As I type this word, I realize that I sound old-fashioned. I'm definitely not going to win the Most Trendy Blog Award with this piece. When I was a teenager, I viewed integrity as something that older-than-me people talked about. As each year passes, I certainly find myself thinking about it more and more. I think that's because it takes years of living to see both the fruit of integrity and the toll that a lack of integrity takes on people's lives. 

If you want to get ahead...Or rather, if you don't want to get left behind or pushed aside in today's fast-obsessed, ambition-driven world, integrity oftentimes gets the shaft. Integrity is unpopular in a dog-eat-dog world. We are taught to do whatever it takes, to value trendiness and instant success over longevity, and to protect ourselves at whatever cost. Why strive for integrity when you can settle for easy? Who needs integrity when you're good at playing dirty politics? And what good is integrity if it can just get you in a tough situation? The problem with these questions is that they are short-sighted.

A chair that lacks integrity will collapse under weight. A boat that lacks integrity will sink in rough waters. A building that lacks integrity will fall when pushed by the wind. The world needs more people who can hold strong under the weight of this life, stay afloat in the midst rough waters, and stand strong when beat against by the changing winds. 

The longer you live, the more you see things - good and bad. I still like to think I'm young - I'm 34 years old - but I have seen more than my share for my age. To be honest, I probably could have said the same thing a decade ago. I saw too much in the few years immediately after college. I saw too early the havoc that a lack of integrity can leave behind. And it was all in the name of fun, ambition, and a chance to escape for a moment. I have lived long enough to see those who lack integrity prosper for a while only to have everything they touched corrode in the end. (It is heartbreaking to watch.) And I have also lived long enough to witness those who have lived with integrity come through on the other side of life's challenges and create long-lasting legacies. I have lived and seen enough to know that in the end, integrity is worth it every time.

So how can you have integrity? Build your character. Character is your substance, the stuff you're made of. Integrity is the byproduct of excellent character. Character can be good or bad. But when it comes to integrity, you either have it or you don't. So build your character: Choose right over easy. Think long instead of taking shortcuts. Face life's pain and obstacles head on, no matter how difficult they may be. Be courageous. Listen to wisdom. Hold onto God in all the seasons of life - both the good and the bad. Be consistent. Pray when it's hard to pray. Worship when it's hard to worship. Seek God when it's hard to see Him. And don't shrink away from things just because they are hard.

Piano Recitals and Lupus

In a little over a month, I will be giving my first piano recital in three years. The last time I gave a recital was months before I was diagnosed with lupus. At the time, I had just earned my Master's in piano performance. The path to that achievement felt like a huge mountain climb, made even steeper by carpal tunnel syndrome and tendonitis in both my hands and wrists. I had no idea that I had a bigger mountain waiting for me right around the corner.

Days before my last "pre-lupus" recital, I wrote in my journal:

Sunday, July 8, 2012

     My shoulder keeps slipping out of place and the joints in my hand are swelling. I was planning on taking a break from the pain medications this summer, but instead I'm taking more pain pills than I've ever taken in my whole life just to function. I have some important performances coming up this month. It will take a miracle for my hands to endure the physical requirements of my pieces and make it through from start to finish. At any moment my hands could stop...I go into every performance with a strong awareness that it could be my last and it will happen only because God will make it happen.

After the recital, my health continued to grow worse:

Sunday, July 22, 2012
     My hands are still painfully swollen. I have pain in my feet, knees, shoulders, and neck....even with all the Mobic, Tylenol, anti-inflammatory cream, and Tiger Balm. It's been going on for about a month now. I'm starting to get worried. Could this be something serious? What is happening to me? Will my body ever have rest from all of these medical problems? I'm only thirty, but I feel like my body is falling apart and shutting down. Even though I know God is taking care of me, I'm still afraid.

I often hear people say, "God will never give you more than you can handle." When it comes to hard stuff in life, I think that's a load of crap. In the months that followed these journal entries, God definitely allowed me to go through way beyond what I could handle. Every morning, every night, I cried to God for mercy. I can't handle the pain! I have absolutely no strength left! I can't go through this one more day! I wasn't being dramatic. I was in too much pain to move. Playing the piano wasn't possible. I had lost over twenty pounds in less than two months. At least a third of my hair had fallen out. And without a diagnosis, there was nothing the doctors could do to help me. I had nothing in me left to keep going. And I was completely dependent on God to sustain me.

So a little over three years later, I'm doing a piano recital. (At this point, I'm tearing up as I type.) So yeah, I think this is pretty awesome. Even if I end up making a lot of mistakes and the performance doesn't sound anything like how I practiced - I really hope that's not the case and that it's amazing - I'm just so happy to be able to play and perform again. To be honest, I'm so glad God let me go through more than I could handle a few years ago. If He hadn't - if He would have let me have easy - I don't think I would experience the profound joy that I have when I play. I'm sure I still would have had joy, but not quite so profound. Music wouldn't be quite so precious and this performance wouldn't be so special. That's the beauty of hard things: They make the good things so much better. Oh, how I love how God shapes life's adventures!

To read more about my piano recital adventure, click here and here.

A Promise

I made a promise.

Back in July, my friend who was battling cancer posted these words on Facebook:

"Hey guys. I just wanted to give you guys a heads up.

September is lymphoma awareness month.

It means something to me."

I asked if she could give a reminder when the time came close. "I'll give you some Facebook and blog love," I wrote. She assured me that she would give a reminder. A few days before the start of Lymphoma Awareness Month, a reminder came, but not in the way I was anticipating. On August 29, 2015, Randi passed away and took her first steps in Heaven. She was 34 years old. She loved Jesus and she held onto Him until the very end.

In honor of my friend, I decided to keep my promise. I believe that Randi would want people to know that lymphoma sucks and cancer is hard. But I think that more than that, she would want people to know that God is good and cancer is not the end of hope. I met Randi in Bible college, where she was training to be a worship leader. Worshipping God isn't just something she did. It's how she lived her life. She sang praises to God until the very end. When the pain was at its worst, she kept trusting God. She loved Him with her entire being, and now she is finally at rest in His glorious presence. As I have dealt with lupus, I could always look to Randi for inspiration and encouragement. She went through so much, but was always full of joy, strength, and she was always ready to pray for anyone who had a need. She was a warrior. Her courage gave me courage. Her life was too short, but she lived a life that was full and significant. I am honored that I had the chance to be impacted by her.

In the last months of her life and battle with cancer, Randi shared some passages from the Bible on her Facebook wall. The verses that she chose are revealing of the hope that she had. A hope that wasn't dependent on her circumstances or emotions. A hope that was unwavering and deeply rooted in a strong, big, and loving God. In honor of her, I want to share these verses with you because I think that no matter what you're going through, she would want you to know the love of Jesus and to have the hope that she had.

The Lord will fight for you; you need only to be still. (Exodus 14:14)

For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. (1 Thessalonians 4:16-17)

I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, "Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." (Revelation 21:2-4)

But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ. (Philippians 3:20)

We miss you already, Randi. Thank you for living your life well. Now rest in the arms of your Savior. <3

Conquering Lupus Fog

I am a pianist. I have lupus. I am a pianist with lupus.

When I received my lupus diagnosis, I had just earned a Master's degree in piano performance and enjoyed a performance-filled summer. Even though I was already working as a music professor and piano collaborator, I had plans to regularly perform recitals. But when lupus came along, symptoms of constant fatigue, arthritis, and cognitive dysfunction (also known as "lupus fog") took performing recitals off the table. I've had opportunities to perform single pieces and shorter programs as a soloist since my diagnosis, but nothing that exceeds 20 minutes. After years of trying to juggle life and work and lupus, and then choosing to do less to accomplish more (which included a very emotional decision to resign from being a piano collaborator), performing a recital is back on the table.

This journey is like preparing to do a marathon for the first time. There is a lot of physical and mental preparation that needs to be done. I have to be diligent in taking care of my body. I have to be disciplined in my schedule and practice. I have to build up my strength and endurance. And for this particular recital, I have to memorize 235 backwards sections. 

Wait...What? Backwards sections. When I was a little girl, my piano teacher taught me a method for memorizing pieces: Divide the piece into small, easy-to-memorize sections and mark them with a small asterisk from beginning to end. Then, number each section from end to beginning. That's right. Number them backwards. The very last section of the piece is section one, the second to the last is section two, etc. Start memorizing section one (which is a small number of measures) by playing it multiple times until it's memorized. Then play section two to the end until it's memorized. Then section three to the end. And then...I think you get the idea. From an early age, I learned my piano pieces both forwards and backwards. Literally. I never stopped using backwards sections and I teach all my piano students to use them, too. So back to the topic at hand...

235 backwards sections. The thought is terrifying. If you don't know, thanks to a nineteenth-century pop star named Franz Liszt, pianists today perform solo pieces (and full recitals) from memory. It's the standard performance practice for classical pianists. Thanks to my childhood piano teacher's backwards sections, I used to pride myself in my ability to memorize pieces. But lupus has made memory - even with hundreds of hours of doing backwards sections - extremely challenging.

Lupus fog is my most frustrating symptom. I have a very strong long-term memory. It's not eidetic, but it is strong. Yet at any moment, my ability to focus and remember things gets lost in a fog. Sometimes I can physically feel when it's about to happen, but usually it feels like my mind just stops and goes blank. I could be busy working productively on a project, in the midst of practicing, or in the middle of a conversation with a student, and then - BAM! - the fog. What am I working on? What key am I playing in? What was I saying? There was even a time when I was talking to someone and I couldn't think of a single adjective during the whole conversation. It was like every adjective was temporarily erased from my vocabulary. 

235 backwards sections. I could get to section 142 and - BAM! - lupus fog decides to pay a visit and I forget which key I'm in. Or - BAM! - I can't remember what notes come next. Or even - BAM! -  I lose track of which piece I'm playing. So, why don't I just plan to perform with the sheet music in front of me? Sidestepping lupus fog is not so simple. It can come even if the music is right there to (theoretically) save me. Even during my practice sessions, when I have the music right there, lupus fog can come and make it all appear incomprehensible. The solution does not lie in shortcuts.

The solution lies in work that is slow, focused, and demanding. I can't prepare my pieces with the expectation that, at the performance, my memory will be in...well...top performance. I'm preparing for every worst case scenario, making contingency plans for when my memory or fingers slip. I'm working habits into my fingers and mind, disciplining both my fingers and my focus. I'm practicing hard and praying harder. And I'm dealing with the fog when it comes while I practice instead of giving up or pretending it doesn't exist.

I am conquering lupus fog - not by wishing it away, but by facing it head-on. When it comes, I'll be ready for it.

How To Encourage Someone With A Chronic Illness (part 2)

I'm doing a series on how to encourage someone with a chronic illness. (You can read part one here.) Part one laid down the foundation. Today, I want to give some cautionary tips. Being an encouragement is just as much about not doing wrong things as it is about doing good things. Before you read on, I just want you to know that it was extremely difficult to write this without sounding jaded. I certainly hope that I'm not. But in the two and a half years I have had lupus, I have been hurt by many well-meaning people trying to encourage me. It is not my intention to blame anyone. It is my intention to equip those of you who have a genuine desire to be an encouragement.

So allow me a moment to give you a glimpse into the world of someone who lives with a chronic illness: It has taken a lot of intentional work to protect myself from becoming jaded. In fact, when I was newly diagnosed and started googling lupus, I was overwhelmed by the vast number of people with chronic illnesses who are jaded, angry, and bitter. And I made a decision from the very beginning that jaded, angry, and bitter would never become words that would describe me. And that is why I started blogging. I want to be a voice of encouragement and joy in the midst of all the negativity and hurt. And if you're reading this, I'm guessing that you want to do that, too.

So, let's build on our foundation:

4. Consider the gravity of your words before you speak or type.

Words are powerful. They can bring hope, strengthen faith, and breathe life. They can also bring discouragement, condemnation, and unnecessary guilt...even when the speaker means well. I'm sure you know the saying, "It's the thought that counts." It's typically used in reference to gift-giving. But it applies to words of encouragement as well. Too many people try to be the voice of encouragement without putting any thought to it. A person living with a chronic illness doesn't need hollow or impulsive words. It's the thought that counts! So, think before you speak (or type). And when the thoughts come, take a moment to consider them. The first thoughts that come to your mind may not be the best for the moment. Don't underestimate the power of words that have been carefully considered!

Now, if you can't think of anything to say that seems appropriate, remember that foolish words are not better than silence. If you feel like you really need to say something but all the words you can think of seem inadequate, something as honest as, "I'm sorry I don't have any good words," can be encouragement enough. Sometimes, words aren't necessary. Sometimes, just knowing that someone wants to encourage me is exactly what I need in the moment. The important thing is not that you had a chance to have your say. The important thing is the kind of mark you leave on the person. Have you left an imprint of encouragement or a wound they must now recover from? 

Sometimes, to better consider our words, it helps to use pen and paper to write a letter. It doesn't have to be fancy or in any formal letter form. It just needs to be thought out and considered slowly. If you're not used to writing letters, maybe write a first draft so you can look over it and make edits before you write a final copy. Even if you don't ever give your letter to the person but just use it to organize your thoughts, there's something about actually writing out your words by hand that makes you more selective with your words. It empowers you to craft them well instead of spewing impulsively. And if you do choose to give it to the person, letters or cards have the benefit of longevity. I love to keep letters and cards that have spoken to me in a special way so I can go back to them when I'm having hard days. Months or even years later, they continue to be an encouragement to me. It doesn't even have to have a lot of words...It's the thought that counts! 

For my Christian readers, I have one last thing to say on considering the gravity of your words: This applies even when the thoughts that come to your mind are words from the Bible or Christian phrases. Statements like, "You don't have enough faith," or "Are you sure there aren't any sins that you need to repent of?" do more to cause hurt than actually draw me closer to God. Don't hide your faith, but be wise in the way you present it. Sometimes the most hurtful words I have received have been laced with scripture or Christian phrases in a way that was insensitive, pushy, or just plain wrong. I'm not saying that the Bible is not a source of encouragement. I have found much encouragement from God's Word both in my private reading and from reminders from others. I am also not saying that every use of Scripture should make me "feel good." But it should always be used carefully. It should never be used to tear someone down, as a means to show how "good" you are, in a nagging fashion, or like an "incantation" to be tossed in the sick person's direction (as though repeatedly typing a scripture reference or a Christian phrase in the comments of someone's Facebook posts will "fix" them). God's word is precious. May we never use it in ways He did not intend, and instead, learn to handle it carefully in a way that draws people to Him!

5. Be slow to give medical advice. Be slow to give advice. Period.

I have a team of doctors I see regularly. They know the results of my latest lab tests and they keep tabs on all my medications and supplements. Treatment for lupus can be delicate. I can't go on a "treatment trying spree." Every change I make requires close monitoring. It is a lot of work. It is tiring. Sometimes, trying something new - even stuff that is all natural - leads to no (or bad) results, added discouragement, money lost, and a heightened hesitancy to try something else. So don't be offended if I don't show enthusiasm for every wellness idea every person gives me. When someone says to me, "I read on the internet that...," on the inside, I'm screaming, "Do you really think you've done more research on my chronic illness than me and my doctors?" I'm not saying that all medical advice is unwelcome. I'm just saying that you need to be slow to give it.

People with chronic illnesses are inundated with advice. All the time. It doesn't stop. Ever. Sometimes Usually, it's just too much. The sheer volume of advice can be overwhelming. For numerous would-be encouragers, when they see someone going through something tough, their knee-jerk reaction is to give as much advice as possible. They want to help. This may come from a very loving, well-meaning desire, but not necessarily a wise or healthy one. The main desire of the encourager should be to encourage, not to "fix the sick person." Personally, I have been left discouraged by people who have trampled over me in their mission to "fix" me. This is not loving. Think about this: If you're giving me advice, chances are, you are one among the many that day who felt they had great advice or the perfect cure. So if you don't know me very well, and you just start rambling all your helpful tips, it's likely that I've heard them all before. And if you're not careful, your words may feel like extra burdens heaped onto my already burdened shoulders. I know that you are just trying to help. But sometimes what is meant as help is just a shot of discouragement that leaves a harsh sting. 

So when should you give advice to someone with a chronic illness? This is where considering the gravity of your words and being slow to give advice come together. There's no perfect science to this. In general, if the person isn't out right asking you for it, I would be hesitant to give advice until I got to know them a bit and took some time to listen first. (I talk more about this here.) Again, I'm not saying all advice is unwelcome, but be slow to give it. And when you do, consider the gravity of your words.

- - - - - - - -

I am not trying to take the stance of an expert or definitive authority on this subject. I'm still learning. And I hope that what I write will open up dialogue. So if you have any questions or some insights to share, feel free to leave a comment. :)

Where Is My Faith?

I am a Christian. I believe God heals. I have lupus. I believe God can heal me. I still have lupus.

I still believe in God. I still believe He is good. I still believe He heals.

This is not easy theology.

I believe that one day God will heal me. I still make plans as though I will have lupus tomorrow. And next week.

I am bombarded by well-meaning Christians who say words like, "You just need to believe for your healing," or, "Just have faith," and then they start reciting Bible passages about healing. I know them all by heart. And I believe every single one of them...I still have lupus.

Where is my faith?

It takes faith to believe God is good when the doctor's report is so bad.

It takes faith to get up in the morning and go to work when it's hard to move.

It takes faith to make plans with friends when my last lupus flare is in the forefront of my memory.

It takes faith to accept an invitation to perform and to practice the piano when my hands hurt.

It takes faith to give to someone in need after another medical bill comes in the mail.

It takes faith to pray for someone to receive a miracle when I am waiting for one of my own. I might add that it takes an extraordinary love to celebrate with others when I see God answer my prayers for them while I am--in faith--patiently holding on to God's promises for my own life.

It takes faith to dream God-sized dreams when I barely have the strength to carry a laundry-sized load.

It takes faith to not give up when life is so hard.

It is not a lack of faith to plan as though I will have lupus in the future. It is an act of faith to live with the belief that I have a future.

I have faith that can move mountains. How do I know? I watch God move my mountains everyday.

There is a chapter in the Bible that has been nicknamed "The Faith Chapter" (Hebrews 11). It tells story after story of people across history whose lives give a picture of faith. There are stories of great victories, miracles, and heroic acts. But there are also stories that did not end so well. In the great chapter of faith, some stories end with pain and death. Even in the happiest of endings, no story is without hardship and struggle. My favorite characters in the chapter are actually anonymous. All that is said of them is that they "were made strong out of weakness." That is what my life looks like. That is what the bulk of the miracles I see everyday look like.

"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." 
(2 Corinthians 12: 9-10)

Anything

I began this summer by praying "God-I-will-do-anything prayers" in the quiet of a monastery. (You can read about that life-altering journey here, here, here, and here.) I have continued to pray these prayers throughout the summer with a completely open and willing heart. Anything has taken the shape of many small things: removing my cell phone from my bedroom, giving God extravagant time every morning, reading the Bible from beginning to end over the summer, and trusting God by obeying His quiet voice with no hesitation. But deep inside my heart, I have known that a day is coming when God will lead me to anything, and anything will not be so small. It will be huge. Crazy huge. At the start of this journey, my "anything prayers" were gut-wrenching. But as the summer progressed, these "anything prayers" have become less intense. Not because I mean them any less, but because they have become easier to pray. (It's amazing how easy it is to pray scary prayers and follow God into the unknown when you have already given yourself completely to Him and have nothing left to hold back.)

Yesterday, anything started to ache in my heart. Today, my heart is torn wide open and all I want is the anything God wants of me. The anything God wants me to do...that only I can do. I have no idea what lays ahead, but I feel like my life is being turned upside down...or right side up. I feel as though there are people who are praying for me who have no idea it's me they are praying for. They are praying for a problem, a seemingly impossible situation. And God, in His omniscience, is looking at me and saying, "Get ready. Anything is about to happen."

A Simple, Quiet Space: Epilogue

Ever since my amazing journey at the monastery (you can read about it here, here, and here), life looks very much like it did before. I still teach and practice piano. While school is out, I'm working on projects and slowly organizing the house we moved into last year. I still spend more time than I like each week organizing all the pills I take for lupus (up to 16 a day). I still lug around a ginormous bag filled with too many books everywhere I go and watch TV with my husband in the evenings.

Same old, same old. But not quite. My days are nuanced in ways they weren't before. And one small change in particular went a long way.

The day I returned from the monastery, I traded my iPhone for an alarm clock. Well, not entirely. I still have an iPhone. But instead of using my phone as my wake-up alarm, I use a tiny alarm clock to wake myself up in the mornings. It cost $5 and is so small it doesn't even have a radio. And where is my phone? Charging in the living room. It's not allowed in my bedroom at night. This one small change led to thousands more. My phone (e-mail, text messages, FaceBook, Twitter, Pinterest, Instagram...) is no longer the first thing I see when I wake up and the last thing I see before I sleep. On my night stand, I have a Bible, The Book of Common Prayer, and a devotional. In the mornings, when I feel lupus the strongest and my body is too stiff to get up, these are the things I grab first. Though my first thoughts range from "Where's my iPhone?" to "I need to brush my teeth," and to "My body hurts and I have too much to do today,"...my first action is to surrender all of these things to God and pursue what matters most. Each morning, my mind races in a million different directions. And each morning, I will my mind to turn to God.

It hasn't been easy. I am breaking habits that are deeply imbedded into my being and starting new habits that the enemy of my soul doesn't want me to have. At first, everything else on my mind felt so urgent and loud (almost yelling). The high-pitched beep beep beep of the alarm clock made me and my husband grumpy. It felt awkward turning to God when my mind was so hazy and I hadn't brushed my teeth yet. But I chose to stubbornly pursue what matters most. Each morning, all the "other stuff" in my mind yells a little softer than it did the day before. My husband and I are getting used to the morning beeps. And I've come to accept that God loves me so much that He will take me just as I am--morning breath and all.

I don't feel like I'm moving mountains in my new morning routine. (Maybe I am and I just don't know it yet.) I haven't had any moments that were full of intense emotion and prophetic words from God. But I'm less frantic now. My day is filled with a calm I didn't have before. Things that would have caused me anxiety don't have that power over me anymore. I loved my work before, but now I enjoy it even more and have a stronger sense of purpose when I do it. My husband and I argue less and talk more about meaningful things. (And now that I just typed this, we're probably going to have an argument about something ridiculous tonight. Just kidding. I hope I'm just kidding.) I feel safer letting God search the little crevices of my heart and fill me with dreams so big they scare me. And instead of feeling shame because I'm not where I thought I would be by this time in my life, I see the significance of what I'm accomplishing now and feel like I'm on the verge of something wonderful.

So this is my life. One small, five-dollar change. I have all summer to make it stick before I go back to working three jobs in the fall. And who knows what kind of stories are waiting for me ahead...

A Simple, Quiet Space: Day Three

[This is the conclusion to my last couple of posts. What follows are journal excerpts from my third day on a spiritual retreat at a monastery. You can learn more and read my journal excerpts from the first two days here and here.] 

Today's Agenda:
   1. Pray and reflect.
   2. Book of Common Prayer devotions before breakfast and lunch.
   3. Read the Bible (Isaiah 43).
   4. Look over Anything.
   5. Spend time outside.

8:21 am.
I feel the world pulling me again to rush. When I woke up this morning, the first thing I did was to shower and prepare for the day, I did not turn to God first. That was a mistake. But I turn to Him now and I still have several hours before we leave this place.

9:17 am.
Like manna, no matter how much I pour myself in God's presence and God pours in me, the next day I must do it all again.

9:46 am.
Yesterday, I feared that I would forget. I will. I will forget again and again. I will keep forgetting because that is what we do on this side of Heaven. There is no shame in that. One day I will stop forgetting because the sight of His face won't let me forget. Until then, I need to keep returning to the simple, quiet places so I can remember again.

11:07 am.
I am thankful for this place. A sacred place full of quiet and full of lessons. A place where it is easy to find the presence of God. A place that gently forces you to experience God's goodness. A place that makes you better because it makes God bigger. A place that makes you homesick for Heaven.

12:30 pm.
During lunch we met a man who just arrived here this morning. He asked us questions about what we do here, how this place works, whether we ever talked to the monks. His wife passed away last fall and he came here for whatever this place can offer him. His journey here is just beginning. My heart is so broken for him. God, please work miracles in his life while he is here. Let him find healing, comfort, peace, direction. Touch the places in his heart that are hurting, that are searching for answers. Let him leave this place full of strength and joy. Do for him what only You can do. Thank You for bringing him here. And thank You for making him part of my journey here. Amen.

12:45 pm.
Lord, I am ready for the world now. Please go with me. Amen.

A Simple, Quiet Space: Day Two

[This is a continuation from my last post. What follows are journal excerpts from my second day on a spiritual retreat at a monastery. You can learn more and read my journal excerpts from day one here.]

Today's Agenda:
   1. Ask God dangerous questions.
   2. Book of Common Prayer Daily Devotions (breakfast, lunch, dinner, end of day).
   3. Read the Bible.
   4. Read Anything.

7:26 am.
Simplify. This word has been stuck in my head for many weeks (months?). This morning, I felt led to do it. I simplified my agenda - both from what I expected of myself to accomplish here before I came and from what I scribbled in a tiny notepad last night. But I won't get as much done...on paper. Maybe God will be able to accomplish much more in me. This practical call to simplify goes beyond my time here. This morning, even before breakfast, I wrote another note in my tiny notebook. I will give God the 2 days after I return home in which I will read nothing except His Word. I will not completely return yet because God will not be finished speaking to me when I leave this place. I am walking into the mystery. I am becoming the person God made me to be.

8:08 am.
The drive for productivity is not equivalent to obedience to God moment by moment. With lupus, there are so many times when my body doesn't allow me to get things done (I feel unproductive), so when I am feeling well (or at least better than not well) I try to compensate by being extremely productive. I daily judge myself based on my productivity. How productive am I being today? This is not the path God wants for me (us) to take. I should daily judge myself based on my obedience to God. Have I taken the time to hear God's voice and have I completely walked in obedience to Him? It isn't that God doesn't want me to be productive. He does. But His call is for obedience. And when I am completely obedient to Him, then I am the most productive for His Kingdom.

8:58 am.
There is a freedom in solitude and simplicity. Here, I can be free from the chains of want, of noise, of wastefulness, of comparison, of busy-ness. I can focus on God untethered here. How can I take this freedom with me when I reenter society?

9:10 am.
...and complaining. This place is free of complaining. I am content here. Content and thankful.

9:49 am.
Anything...

...God, is there anything You want me to give up or anything You want me to start doing?...

...God, I will do anything. I will...[This is one of those places where the words are between me and God and NOT me, God, and the internet]
...I will stop giving You snippets of my day and start spending extravagant time with You.

10:51 am.
I am realizing that in this place, God isn't trying to tell me to "do something." He is completely changing me. When I return home, I won't just be someone with a task from God. I will be a different person.

11:16 am.
Anything...Live for God's glory:
   - Blog for God's glory.
   - Pray for my husband for God's glory.
   - Play piano for God's glory.
   - Teach for God's glory.
   - Clean for God's glory?
   - Love people (and show them love) for God's glory.

[This prayer and commitment to do anything got very real. Very painful. Very difficult. A lot of tears. A lot of words that will stay in my journal.]

1:16 pm.
I choose to live for things I cannot see yet.
I don't want to miss anything God has for me.

2:15 pm.
Dangerous question: God, where do You want to take my plenty and pour it out? I will do anything.

6:20 pm.
In this simple quiet place, I can hear from God and experience rest...I am not perfect here, but I am closer to God. I want to bring this with me. To have moments--no matter where I am--when I can enter this simple, quiet place where I can encounter the glory of God. A different reality. A more real reality.

7:40 pm.
The sun is starting to set, the bell for the compline just rang, and I am feeling sad that this is my last night here. My heart is not ready to go back. I don't want to lose what I have here. I'm scared I will go back and forget. God, please don't let me forget! Please don't let me go back. Please make this change stick. Please work a miracle! Please don't let me go back to my old ways. Please make me different. Completely different from the inside out. Full of Your glory. Full of Your power. Full of You. Take my fear. Take my mess. Take my inadequacies. Take all of me and turn me into something new. Something beautiful. Something that radiates your glory.
          selah.
                       Amen.

8:08 pm.
Oh, the transformation--the journey--from yesterday to today! I came empty. Now I am full to overflowing. I came wanting to quit everything. ("I quit" became my motto the last few months.) Now I feel like I'm about to embark on an adventure into the unknown. I came feeling spent. Now I feel ready to give again. This is the reward for spending extravagant time with God. When you give extravagantly to God (however meager that is), He will give extravagantly to you (How limitless that is!).

A Simple, Quiet Space: Day One

I was physically and mentally exhausted from an over-packed life that just kept going and going...So we went to a monastery. That's right. A monastery. With monks. I love going there. It's a quiet place. You don't have to take a vow of silence when you are a guest there. People often talk a bit during the meals and in the public areas. But there is a freedom from the constant noise that is impossible to escape in daily life. My husband and I each stay in our own room with a bed, chest of drawers, reading chair, and writing desk - everything you need for a spiritual retreat and nothing more. (There is a bathroom too...It's not that bare!) Bells ring throughout the monastery to signify the monks' prayer times and services (the first rings at about 3:30 a.m.) and there is a schedule for meals (prepared by the monks), but you have the freedom to follow your own schedule. I went with an agenda:  Seek God and listen to His voice. It was a simple agenda, but not an easy one. In that quiet room, there was no hiding from God, no piece of my heart that was left unchallenged. It was a journey--the kind that once you go on it, there's no going back to the way things were.

 I had a few supplies to help me:
   - a study Bible
   - a very thick journal and a lot of pens
   - a book: Anything, by Jennie Allen
   - another book: something by Kierkegaard (which didn't get read at the monastery at all)
   - The Book of Common Prayer (I am not Anglican, but sometimes I like to use this book as a tool to help me pray when I can't find the words on my own.)

What follows (in this and the next couple blog posts) are excerpts from my journal. (I filled over 15 pages in less than 3 days.) This is not a researched, theological treatise or a display of spiritual strength. These words are raw and many were written through tears and deep emotions. I left out the parts that I feel are just between me and God, but I wanted to give you an opportunity to be a part of my journey, to learn some of the lessons I learned, and ask some of the questions I asked.

DAY ONE
We just arrived here. I quickly ate lunch and felt awkward in the silence. It will take a while for my soul to slow down and find rest in the quiet...

Today's Agenda:
   - Pray the Daily Devotions from the Book of Common Prayer.
   - Read the Bible.
   - Read Anything.
   - Quiet my mind so I can hear from God.

1:05 pm.
I have no words to pray. This is embarrassing to me. I am so mentally worn out that no words come. Yet I know that God hears what I cannot say and knows what I am too numb to feel.

1:31 pm.
God, I will do anything...

3:49 pm.
...I want to let go of everything that is keeping me from God and completely live for Him. I want to know Him intimately. Not like my "glory days" back in high school or college. I want to know Him now--as a 32-year-old and everything that entails. I want a life that is marked by His presence. I want God.

4:32 pm.
Doing many things does not compensate for pursuing your One Thing.

8:04 pm.
Today, I am making a decision to surrender everything to God and committing to do ANYTHING for Him. Anything. I have absolutely no idea what "anything" is. No idea what lays ahead. God hasn't told me yet. I'm choosing to be obedient. Completely obedient with no hesitation.

8:25 pm.
What is the "anything" God wants me to do for Him? I am stepping into the unknown. I am starting to feel comfortable in the silence. Time to start asking God some dangerous questions...

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This is the first in a series. You can read more here, here, and here.

A Word (not mine) Of Encouragement

Today, I feel like I experienced almost every human emotion possible.  I was very tempted to spread my negative feelings and publish my rants for everyone in SocialMediaLand to see.  (Oh, how we love to tell the world how we feel about stuff as though we are making the world a better place by doing so.)  But what is the point in that?  I don't just want to be heard.  I want to have a significant life - a life that means something, a life that makes other people better.  Sometimes, I can't come up with good words.  Sometimes, if I want something good to come out, I have to disappear and let God speak because I'll just make a mess.  So if you're discouraged, angry, worried, heartbroken--I felt all of these today--here are some God words that encouraged me tonight:

"When you pass through waters, I will be with you; 
     and through the rivers, they shall not overwhelm you; 
when you walk through fire you shall not be burned, 
     and the flame shall not consume you. 
For I am The Lord your God, the Holy One of Israel, your Savior."
          (Isaiah 43:2-3)

Worth It

When I'm teaching, I look like I'm full of energy. I pour my whole heart into it because I believe in my students and I believe in the subject matter. My students think I'm an extrovert. They have no idea that I'm an introvert (and that lupus has made me even more so), that I spend so much time alone in my office so that I'll have strength to teach my next class, that at the end of the day my body shuts down. Everyday is hard. Some days are excruciating pain. But I love it! I love that I have something in my life that is worth every ounce of my energy. Something worth waking up for. Something worth feeling tired for. Something worth giving my all. 

And that's a tiny little piece of what Good Friday is about. The incredible idea that we were worth it.

It was now about the sixth hour, and there was darkness over the whole land until the ninth hour, while the sun's light failed.  And the curtain of the temple was torn in two. Then Jesus, calling out with a loud voice, said, "Father, into your hands I commit my spirit!" And having said this he breathed his last.   (from the account of Jesus' death in the Gospel of Luke)

Lessons From The Monastery

Last weekend, my husband and I went to a monastery for a few days to get away from the noise of the world and find some solitude. When we first arrived, I had a hard time slowing down. I'm so used to packed schedules and never ending to-do lists. It took the entire first night to get all the hustle and bustle out of my system. Even when I was reading my Bible that night, I had to stop and ask myself, "Why am I rushing?" I learned that night that I need to give myself more space to breathe, to think, to listen.

When I woke up the second day, I was ready for the slower pace. I did a lot of praying, reading, and thinking between my meals. I was even able to go on a little hike and take a nap. I learned that an hour of prayer can go by so fast when you are praying for things and people you care about. I learned that every moment of my day doesn't have to be filled with stuff, that God has a way of speaking to us and refreshing us in the spaces. I learned that a boring moment isn't necessarily unproductive - filling boring moments with useless things is. I learned that a state of rest can be extremely difficult to enter into and way too easy to get out of. I learned that there's too much unnecessary noise in my life that is robbing me of some of the things I want most. I learned the power of intentionality in spending extravagant time with God. It goes against the grain of the busyness of our society, yet it propels us to a greater level of productivity and effectiveness that all of our busyness could never attain. It is the extravagance of time that allows us to experience greater depth.