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.

 

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.

Do Hard Things

An entire month went by without a single piece added to my blog. So, what kept me too occupied to blog? I was practicing the piano. Yup. (You can get a peek into one of my practice sessions here.) I wanted to get in as much practicing as I could before my teaching schedule goes back into full swing at the university. And with all the hours of practicing, I finished memorizing my 235 backwards sections! It wasn't easy. At the end of each day, my mind was as sharp as mush, my hands were strong like Jello, and my SI joints were as cushy as knives. It was hard. And it was worth every minute.

I am able to do what I do because I don't let hard stop me. I just keep going, doing what I know needs to be done to achieve my goal. Even when I'm discouraged. Even when I'm struggling. Even when I feel like I hit a wall. Even when it's not the most exciting thing going on (or when it's more exciting than I prefer). Even when lupus adds limitations that make my impossible seem ridiculous. I would rather live a life that is hard than not truly live at all.

Do what it takes. Even if it's hard. Even if you have to go slow. Even if you get discouraged along the way. Even if the end seems so far...because this is the road that leads to great things. 

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.

God's Music

I woke up in the middle of the night to the sound of thunder, with a Faure nocturne and lyrics in my head: 

"...I hear the rolling thunder,

Thy power throughout the universe displayed."

I am curled on my couch - not from a lupus flare for once - so I can soak in all of the beautiful sounds that are surrounding my house and swimming in my head. I am awestruck by the beauty of this space. The power of the thunder accompanied by millions of droplets. Crescendos and diminuendos. Melody and percussion. Moments of great fury and other moments of rest.

God is playing a symphony in the sky. And in my heart - I dare not speak out loud lest I disrupt His performance - I whisper, "Bravo, God. Bravo."

A Moment in a Museum

I'm in Washington, DC for the week and I am so ridiculously happy. I love this place. My husband and I lived here for a couple years early in our marriage and we love to dream about coming back. So anytime we get a chance to visit, we are are like two kids in Disneyworld. Disneyworld, except with museums instead of rides and monuments instead of people dressed up as Disney characters.

I spent today exhausting myself at the National Portrait Gallery. Every time I visit, they have new temporary exhibits, so every time I come back it's a new experience. Today, I was captivated by one temporary exhibit featuring the photography of Yousuf Karsh. (I thought of trying to write a fancy description of Karsh and his work, but then felt completely inadequate. So if you're truly interested...Google it.) One particular photograph mesmerized me: an image of Aaron Copland. Copland was an important American composer who fascinated me from an early age. I remember hearing one of his pieces, Cat and Mouse, at a piano competition and then begging my piano teacher to let me play it. I remember being moved as I heard my professor give a lecture on his life while I was in grad school. And then, here I was with this photograph in front of me. Copland seated at a grand piano with one of his manuscripts and his eyes staring at piercing the camera.

I felt like he was looking directly at me. It was as though this photograph was a bridge between times and I was given the opportunity to spend a moment with Copland himself. Standing in front of his picture, I was transfixed. I didn't want to leave that spot. I fell in love with that portrait. I wanted to take a picture of it on my phone, but signs clearly indicated that no photos are allowed for this exhibit (and they had plenty of guards around to make sure no rules would be broken). So I stood there, staring. I soon became very aware of the crowds of people around me, squeezing in to see this picture of a man they probably knew nothing about. My hypersensitivity won out and I sadly walked away.

The gift shop was just steps away, so I went in with hopes of finding a postcard with an image of my new favorite piece of art. Nothing. I so wanted to be able to look at that picture again and again, whenever and wherever I want. But some things are meant for just a moment.

I returned to that spot three times, trying desperately to ingrain the image into my mind. But even now, mere hours later, I find that beautiful image slipping away. And I will probably never be able to see it again. And even if I do, I will never be able to relive the experience of seeing that work for the first time. That moment is gone forever. 

I have many moments I wish could never end. These are the special moments that make me want to keep living. They are beautiful, precious, inspiring. And they get overshadowed by a myriad of moments that are hard, painful, or mundane.

I am a pianist. It's not a hobby. It's my profession passion. I love my work art. I also have lupus. There are days when it is physically impossible to practice. There are other days when I come home from a day of rehearsing in tears from the pain and exhaustion. I go into every performance with the knowledge that it could be my last. This is a hard way to live. But I love it. I love it because I love all the moments. I don't let them slip away unnoticed. I let them mean something. I live them - truly live them. All of them.

Lupus, Scriabin, & Overcoming Limitations

As I type this, I have two Hello Kitty band-aids on my right thumb to cover two tiny holes where my doctor injected me with cortisone. My left hand is in a splint to keep my left thumb from getting as severely damaged as my right thumb had gotten. After my right thumb stops aching in a few days, I will have the joy of wearing splints on both hands. Look out, world! I'm going to look awesome! Cortisone injections in my hands have become a normal thing for me. You would think I would get used to them, but I don't. My doctor has become quite accustomed to the little, atonal songs I sing to distract myself while he sticks needles into me. Yesterday, I asked my doctor if there was anything we could do to keep me from having to get these injections so often. He responded, "Well, you're my only patient who's a pianist, so..." I have two choices: I can stop playing the piano and reduce my number of cortisone injections each year, or I can keep playing the piano and continue needing the injections. Both options are painful. I would rather pick the option that lets me have a life.

...

Nocturne in D-flat major (from 2 Pieces for the Left Hand, Op. 9), by Alexander Scriabin

There is something about this piece that is all about overcoming limitations. If you listen to it, you probably wouldn't realize how different it is from any other piece. But when you see it performed live, it is an amazing experience. The pianist's right hand (the hand that is closer to the audience) doesn't touch the keys even once. It is a piece for the left hand...solely the left hand. When I first saw it performed, I sat there thinking, "I can't believe all these sounds are coming from one hand." The fact that this piece has such a great limitation doesn't make it any less brilliant or virtuosic.  In fact, it's limitation makes it all the more so.

Horrible pain in my right hand drove me to start working on this piece. As I have delved deeper into its intricacies, I have fallen in love with it. It's not just a piece I can play when I am in pain. It's a reflection of my life: The process to learn this piece is stretching, difficult, slower, and takes a lot more thought. I can't practice it for many hours a day (as I do for other pieces) because I don't want to push my arthritic left hand beyond it's limit. Did I mention that I'm right-handed? I'm not just limiting myself to one hand. I'm limiting myself to my hand that is more limited! It's the kind of piece you take day by day. Whatever my hand can handle doing that day, that's what I do. No more. No less. The result is beautiful, eye-opening, inspiring. For me, it elegantly laughs in the face of the word impossible.

I have limitations. They are very real. They make my life very difficult for me and my husband (who spends more time than his share taking care of me). I have to do many things most things in my life differently from everyone else. My hands are small for a pianist. And then when you top that with systemic lupus (which carries with it things like arthritis, tendonitis, and carpal tunnel syndrome), playing the piano becomes impossible harder nearly impossible. But when people look at my life, I hope my limitations are not what they see. I hope they don't think, "Eh. Not bad for someone with limitations." I hope they see something beautiful. A masterpiece. And if they realize what kind of limitations I face, I hope they think, "Impossible! I can't believe someone with those kinds of limitations can do all of that! How does she do it?"

I hope they ask. And I hope people never stop asking me...because I love the answer so much. But I'll leave that for another day.

For now, I have some aching hands to take care of.