A Special Anniversary

This is a very special day.  On this day last year--two days after my birthday--the doctor called to inform me that I have lupus.  On this day, my life changed and everything took on a whole new meaning.  Words and phrases such as joy, pain, love, support, strength, faith, passion, prayer, and hope hold much deeper meaning to me now.  Even words like routine and normal carry with them a beauty I never saw before.  I don't know if it's something that can be explained with words.  I think that maybe it's something that can only be felt in the depths of your being.  I think that's why I love being a musician.  I love being able to express things that are too deep for words to convey.

When people hear that I have lupus, they typically say, "I'm so sorry."  I understand their empathy, but I don't feel the sadness they express.  What I feel can be better described in what people typically say next: "If you didn't tell me, I wouldn't know you had lupus.  You're just so full of joy that it's hard to believe you're going through anything!"  But that's the thing.  I'm going through something.  Something very real and hard and painful.  That's my everyday.  Real.  Hard.  Painful.  So when I get out of bed in the morning without my husband's help, I have a reason to be excited for the day ahead of me.  When I play a piece on the piano that most pianists who are well can't play, I have a reason to feel like I'm more than a conqueror.  When I'm in church and able to stand alongside other worshipers and participate, I have a reason to thank God and say He is good.  When I'm struggling and my husband holds me at the end of a long day, I have a reason to fall more in love.  

So today is very precious to me.  Today I look back and reflect on a hard year...and I wouldn't trade it for anything in the world.  Why?  Because today is the anniversary of when I started to learn a new definition of what it means to live.

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)

Leaving the place that I know

As I type this, I'm surrounded by boxes and boxes and boxes.  This is our last full day in our apartment before friends come to help us move into a house tomorrow.  There are so many reasons we wanted to move:  It's way too tiny and we ran out of room for our books.  We're tired of sharing walls and hearing our neighbors stomp up the stairs in the wee hours of the night.  We're tired of dealing with the management office workers that make horrible decisions and don't care...  We're ready to move on.

But this morning, I find myself a little slow to work on the last bit of packing.  Yes, I'm tired from all the packing I've done up to this point, but what I feel is a little more than just tired.  I'm a little sad.  I'm sad because this tiny space has been my home for the last four years.  Four years.  That may not seem like a long time, but that's the longest my husband and I have stayed in one address since we both left home to go to college.  This place is comfortable.  It's familiar.  I'm going to miss the farm road scenery.  I'm going to miss the camel we say "hi" to everyday on our drive home.  (Yes, there's a camel.  There are also alpacas, horses, donkeys, cows, and other animals we never figured out so we just call them "beasts."  On our drives home, we've been surprised by deer, wild turkeys, and owls.  Our drives home will probably never be so adorable again.)

Over the past month, in the midst of packing mayhem, I've had moments when I briefly think, "Wouldn't it be easier to stay where I'm at?  Am I really done with this place?  Do I really want to move on?"  Yes, it would be easier to stay where I'm at.  But even though I may not feel 100% done with this place, yes, I really want to move on.  If I stay here, I will miss too much: 

     an adorable house
     in an adorable neighborhood full of trees and pretty houses
     with cute shops and restaurants within walking distance
     a front door that's red and makes me think of old houses in DC
     a fireplace
     a backyard
     a front yard with trees
     space for a Christmas tree
     space to hide the Christmas tree when it's not Christmas
     space to dedicate a whole room to our books and have a home library
     space for my pianos (yes, plural)
     space to host a party with more than two friends at a time
     space to play board games and do puzzles
     space...

It's worth leaving the comfortable and familiar to have something that's better.

Once upon a time, there was a girl with long hair...

I used to have long hair. It was beautiful. It made me feel beautiful.

...But then lupus happened. Discoid rashes on my scalp caused my hair to fall out in clumps. I still had the hair on the top of my head, so I got a haircut to try to hide the bald spots underneath. As my life was dramatically changing, a dramatic haircut seemed appropriate. (Thank you, Robin @ Moda Salon!)

After starting treatment, more hair fell out. I had a total hair loss of about 50%. As a woman, losing my hair was very emotional, often humiliating. I could push through the physical pain and even feel like I could conquer the world. But every time I saw myself in the mirror, it was a harsh reminder that I was sick. I like to think that I'm a positive person, but it was hard to be positive. I felt ugly and less feminine. I felt like a freak. For months, I never left home without a hat. I wanted to hide.

I didn't feel like I looked beautiful, but I made a choice to BE beautiful. I may have lost my hair, but I could still smile and laugh. I could still tell stories and play music. Even still, with all of the dramatic changes that lupus brought to my life, I wanted to hold onto as much of my hair as I could. But I realized I was holding on just to hold on. It was time to let go and move forward. So when my hair started to grow back in the empty spots of my scalp, I was inspired by Anne Hathaway in Les Mis and made a bold decision to chop it all off and start over.

Today (about 9 months after the diagnosis) I'm slowly growing my hair out again, but I'm fully aware that at any moment, it can fall out and I'll be back to a pixie cut...and I'm okay with that.  Hair grows back. My life is still good.  I can still be beautiful.

Thanks to Chad @ Moda Salon for the pixie haircut and convincing me to not buy a wig. Thanks also to my husband for telling me I'm beautiful everyday.

May is Lupus Awareness Month

Last fall, when the doctors first mentioned I might have lupus, my first thought was, "It can't be!  Dr House said that it's never lupus!"  My second thought was, "What IS lupus?"  Systemic lupus erythematosus (aka, "lupus") is an autoimmune disease in which the immune system can't tell the difference between a good cell and a bad cell, so it starts attacking everything.  Every lupus patient is different, each dealing with their own set of symptoms.  For me, some of my symptoms include arthritis, rashes (which caused about half my hair to fall out), severe dry eyes, and fatigue.

Here are some facts I compiled from The Lupus Book, by Daniel J. Wallace, MD:

- In the United States, nearly 1 million people suffer from lupus.  It is more common than better known disorders such as leukemia, multiple sclerosis, cystic fibrosis, and muscular dystrophy combined.  Those who develop SLE do so in the prime of life.  And 90 percent of these sufferers are women, 90 percent of whom are in their childbearing years.  Moreover, the effects of the disease disrupt family life and account for billions of dollars in lost work productivity.

- Lupus can be a very difficult disease to diagnose.  Many lupus patients look perfectly healthy, but surveys have shown that newly diagnosed patients have had symptoms or signs for an average of 3 years.

- Research on lupus is also relatively underfunded compared to studies of other life-threatening diseases.

 So, what can you do for Lupus Awareness Month?

1.  Put on Purple on Friday, May 17 and tell people why.
2.  Post facts about lupus on your social media pages.
3.  Donate to help with lupus research.

(For more information, check out www.lupusawarenessmonth.org.)

We are CBC

Today Central Bible College is having its last classes and last chapel...ever.  As though God has chosen poetic expression on this last day, it's raining.  This is such a special place.  For 90 years, thousands of men and women came to this place to be trained as ministers and missionaries, and left this place to take their part in changing the world. 

For me, this is where a lot of the people who made a huge impact on my life had their training.  This is where God showed me that my identity can be found in Him - more than a musician, more than a preacher, I am a child of God.  This is where He gave me a vision for Japan.  This is where I learned how to study God's Word.  This is where I learned how to love, how to invest in, and how to develop people.  This is where I learned how to seek God with a fervency I never knew before.  This is where I learned to trust God in the midst of hard times.  This is where I met my husband and many lifelong friends.  I have so many incredible memories in this place.  I would not be who I am had it not been for CBC.  I am one of many, and I am honored to be part of an amazing legacy.  At the end of this semester CBC will close its doors, but the legacy will continue for generations to come.

"Heaven will forever look different because of CBC."

How do you say goodby to a place like this?

Sixth Month-iversary

Today marks six months since I was diagnosed with lupus. Over the last six months, I have experienced a season full of good days and hard days, times of intense emotion, moments of humor, heartaches, challenges, and victories. Most of all, this has been a season of learning:

Learning new routines and discovering the consequences for when I don't stick to those routines (like how if I miss taking my meds, I'll throw up uncontrollably the next day).

Learning to show grace when people try to diagnose me or fix me. (Oh, how creative people can be!)

Learning to function at a different pace, to slow down, to take breaks, to do less (without accomplishing less).

Learning that I must consciously choose between two extremes: I can either get depressed or be positive in everything. I can either allow my situation to paralyze me or fuel me. I can either doubt God or trust Him. I don't have the option of choosing a middle ground. And each morning, I have have to make the decision once again. (I don't think very profoundly in the morning. The way these issues manifest themselves in the morning sounds more like, "Should I get out of bed today?")

When I was diagnosed, I decided early on to believe that just because something is hard doesn't mean that it's bad. Just because life is hard doesn't mean life is bad. Six months down the road, my belief has not changed.

My life is hard, but my life is not bad.

My life is good.

And tomorrow morning, I think I'll choose to get out of bed.

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.

How To Pray For Someone With A Chronic Illness

I have been tremendously blessed with a community of people all over the world who have been praying for me.  I'm thankful for people who believe that God is powerful and can heal, people who hold me up in prayer when I'm feeling weak and am in urgent need.  If you are one of these people, thank you so much!

There was a time when sickness took over my life and everything stopped.  When I was in so much pain and could not move.  When the only productive thing I could do in a day was pray in bed.  Even holding a book to read was not an option.  That is not my life anymore.  Since I've started treatment, my mobility has returned.  And though I'm still getting adjusted to living day-to-day with a different set of challenges and needs, life has found routine again.

What many people don't realize is, though important, healing from lupus is not my greatest concern.  At the moment, it is not my most pressing need.  There are so many things (aside from lupus) that are heavy on my heart:

• This semester, I'm teaching a lot of classes and piano students at the Bible college where I did my undergrad.  I want to do well, to inspire, to impact the lives and future ministries of my students.
• Last year, my husband and I got out of debt!  We were so excited and we had plans for our financial freedom (like taking a trip to Japan next summer).  But piling medical bills, school bills (my husband is about to start his 2nd semester at seminary), and a little car crash have changed our financial situation.  We know that some of our plans may need to be put on hold, but we don't intend on letting them go.
• I want to perform seriously again.  After getting a master's degree in piano performance and having a summer filled with performing, lupus has been quite the interruption.  I'm ready to start learning new music and prepare for another recital.
• Japan.  Ever since we were in college, my husband and I have had a dream of moving to Japan to start a church.  Before lupus, we took two years of Japanese language classes and we're up to a first or second grade level in our reading and speaking abilities.  (Hey, first graders can do a whole lot!)  This dream is still alive.  We are still going.  So much needs to take place for this to happen.  We need a lot of miracles.
• I want my life to point people to God.  On good days and bad days.

These are the things I want people to pray about for me.  Of course, I don't want people to stop praying about my battle with lupus because it has an effect on all of these things.  And looming in the back of my mind is the knowledge that in an instant, a lupus flare or complication can dramatically interrupt my life again.  But with or without lupus, there are more important things in my life.

So, how do you pray for someone living with a chronic illness?  Pray for healing, strength, encouragement, and peace (for them and for the family members who take care of them).  But don't stop there because their life is not just sickness.  Their life is so much more.