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.