Pictures of Lupus, Op. 1

This is the start of a new series called, "Pictures of Lupus." It's an attempt to give insight to the question, "What is it like to have lupus?"

I took this pic when I was getting my first labs of the year done today. Every 3 months, I have to have labs done to monitor my health and to make sure I don't have drug toxicity from the medications I take.

Snapshot of My Year in Books

When one has a blog called "A Room With Books And Music," one must discuss one's books. Here's a sampling of my favorites in 2015:

1. The Classical Style: Haydn, Mozart, Beethoven, by Charles Rosen

2. Creativity, Inc.: Overcoming the Unseen Forces That Stand in the Way of True Inspiration, by Ed Catmul (president of Pixar)

3. Scripture and the Authority of God: How to Read the Bible Today, by N.T. Wright

4. Live Dead Joy: 365 Days of Living and Dying with Jesus, by Dick Brogden

5. The Bush Always Burns: Jesus in the Unnanounced Moments of Life, by Heath Adamson

6. A Circle of Quiet, by Madeleine L'engle

7. Is Everyone Hanging Out With Me? by Mindy Kaling (This is the first book that I ever read purely for the laughs.)

8. The Phantom Tollbooth, by Norton Juster (because sometimes you just need  to read a childhood favorite again as an adult)

9. Never Let Me Go, by Kazuo Ishiguro

10. The Island of the Day Before, by Umberto Eco

Bonus. Secret Garden: An Inky Treasure Hunt and Colouring Book + Enchanted Forest: An Inky Quest and Colouring Book, by Johanna Basford. For the record, I had coloring books as an adult before it was cool to have coloring books as an adult. But, nothing I had compares with what has come out in the past few years. These 2015 acquisitions will be my 2016 escape.

What were some of your favorite books in 2015?

What Doing Less Accomplished

At the start of the year, I made a commitment to do less to accomplish more. It was scary at first. A part of me was afraid that I was following a lie—that doing less would not accomplish more as I had hoped. An even bigger part of me felt like I was being lazy or unproductive. But I have learned that having space in my life and getting the rest I need can be one of the most productive things I can do for myself and the people I love. Intentionally creating space and having rest does indeed make room for greater things.

So what exactly did I accomplish by doing less this year? Here's a glimpse:

1. I've done the dishes and laundry. This may sound silly, but for so long I didn't have any strength at all to do some basic things. I was so depleted from work that I had no strength left in the evenings or weekends to do anything. My husband had to do these things for me 100% of the time (on top of working full time and grad school). He still helps me a lot, but the burden is no longer completely on his shoulders. This may not seem like that big of a deal, but being able to contribute to doing the dishes and laundry has given us space to do better things...

2. Instead of spending all of my free time lying down in bed or on the couch in exhaustion, I've been able to enjoy life with my husband. (It also helps that he isn't exhausted from doing everything in the house.) We've gone out, explored bookstores, played board games, and had meaningful conversations. (If you can't tell, we're both introverts.) We did more exciting things too...like going to Disney World (which is a pretty big accomplishment when you have lupus).

3. This past semester, I did NOT dismiss any of piano students early so I could go throw up. This is an actual accomplishment? Yes, it is. Lupus has a way of making sudden, unexpected appearances. But it's amazing what a difference resting and taking care of your body can have. My lupus is still active and I still experience fatigue and aches and pains—I had a total of 4 cortisone injections this past semester alone—but lupus hasn't kept me from being present to my students. I can honestly look back at this past semester and be proud of what I gave in every lesson. (If you're one of my students, I'm sure you have your own opinions of how each lesson went. Let's just celebrate the good stuff right now.)

4. I've done things with friends. I couldn't do this last year. (Again, I had no strength.) And not being able to cultivate relationships left me feeling lonely and emotionally drained. (Even the most introverted people need relationships.) But this year, I've gone out for coffee, lunch, and even the movies with friends! I'm not exactly a social butterfly now, but the fact that I had a social life at all this year is a huge victory for me. After all, it's not all or nothing. It's better to have a limited social life than none at all.

5. I performed my first full piano recital since my lupus diagnosis. When I finished my Master's degree, I imagined that performing recitals would be a yearly thing, but lupus put that dream on hold...indefinitely. I don't know if this is something I'll do every single year, but it's such a good feeling to know that performing as a soloist is back on the table. My music-making days are not over yet.

6. I've started dreaming again. There are so many things that got pushed aside when lupus came into the picture. But this year, old dreams have been revived and new dreams have been born. Steps are being taken. Parts are moving. Big things are in the works. (I realize I'm being vague, but some things need time to develop and take some shape before sharing with the rest of the world.)

Even though I didn't cross off every item on my 2015 list of goals (such as learning Latin or songs on the ukulele), I love what doing less allowed me to accomplish this year. So as I look forward to the coming year, what is my theme/goal/resolution going to be?

Reprise: Continue to do less to accomplish more. 

I know, after this past year, my new theme isn't very original. I don't care. It's not that I can't think of something better. And it's definitely not that I don't feel like I made enough progress in 2015. It's that I feel like I'm just getting started. Of course, I want new adventures. But I'm at a point in my life when, in order to find new adventures, I need to go deeper and farther. I'm not scratching items off a list. I'm growing, transforming, becoming. 

So bring it on, 2016. I'm ready for you!

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.

Remembering

This time of year makes me very contemplative. October 7 is my birthday and October 9 is the anniversary of when I got the call from the doctor telling me I have lupus. So October 8, 2012 is a sort of "dark day" in my memory. I remember the physical and emotional pain of not having the strength to get out of bed myself. I remember the questions in my head, wondering what was happening to me and asking myself, Am I dying? I remember the agony of waiting for the answers to come...wondering if they would ever come.

The past three years since my diagnosis have been a whirlwind of hard and wonderful. I am thankful for life - so much more thankful than I was before I had lupus. I'm thankful or my husband. For my work. For the people I love and the opportunities before me. For the ability to see God's handiwork a little more clearly. So much in my life means more to me. And the unimportant things mean so much less.

And so when it comes to anniversaries, they feel weightier to me. I can't just dismiss them. I need them so I don't forget. I don't want to forget what I've been through. Even all the horribly hard stuff. I want to remember it all....because it's all the hard stuff that makes the good stuff all the more sweeter. Life is so much harder with lupus, but I am so much happier because I feel the joy of every victory, every good day, every beautiful moment.

So today, on the anniversary of that day between my birthday and the call from the doctor that changed everything, I remember what it means to be truly alive and I thank God for another year.