One Patient's Positive Perspectives

At the piano every morning

Music and lupus goals

Over the past couple of years, learning to play the piano has been a personal, musical and spiritual goal woven throughout the activities of each day, with a purpose.  My husband is an accomplished church pianist, and music performance is focal point of both of our lives.   We sing solos and duets together, and he is the church choir pianist, and one of several pianists that play for church services along with congregational hymn singing, and solo piano pieces played as offertories.

For most of my life I have studied and performed vocal music, and studied conducting and music theory during four years of college in San Francisco and Phoenix.  I also played the violin for years, although lupus arthritis has challenged my joints and caused me to set my favorite instrument down, because vibrato motion causes my left hand finger joints to balloon excessively.

When I realized that playing the piano did not aggravate my arthritis, and that playing was an excellent morning measure of my neurological abilities, I began sitting down at the piano every morning to sight-read through hymns.   This excellently measures activity of my CNS lupus symptoms, and gauges the fitness of my reflexes and eye-hand coordination necessary to safely drive to work.

Musical stepping stones

Musical stepping stones

Playing piano soon became a regular part of my morning routine, and before very long my piano reading and playing skills started improving.  My long-term desire has been to gain piano proficiency.  I was delighted to learn that my active CNS lupus symptoms would not prevent it, and that the very diagnostic tool I had used to test my mental fitness each morning was actually improving it!  I realized along the way how much I simply enjoy playing and making music at the piano.  I am no virtuoso, but the experience is extremely musically  satisfying.

Recently, I started taking piano lessons from one of the other church pianists.  My husband is a great coach and encourager, but it didn’t seem like such a great idea to have him as my piano teacher.  He heartily agreed, and supported me in this important step toward reaching my personal musical goals.  The added structure, coaching and accountability of formal piano lessons helps my confidence, and helps me find and improve some of my specific musical weaknesses.

For some time now, I have played piano for services at a weekly nursing home church service conducted by our church.  This helps exercise my developing musical skills and allows me to deal with the butterflies and nerves associated with playing a new instrument in public.  A few times recently,  I have also played piano during hymn singing for our adult Sunday school class when my husband was ill at home.  Each new performance setting has strengthened me.

Musical milestone

Butterflies surrounding a musical milestone

Each time the use of my newest musical skills are stretched, my prayers for focus and victory over “the butterflies” have been graciously answered.  This past Sunday evening was a major musical milestone in my piano adventures.  I was asked to play the offertory for the evening service, and for most of the congregation, this was the first time that they have heard me play the piano.

Many of my closest family and friends were kind enough to support me in personal prayer.  They understand my desire for the music to bring attention and glory to God, and not undue attention to me.  Those closest to me, who understand my battles with CNS lupus, were also interceding on my behalf for God’s help with my mental focus and memory.  These personal “prayer warriors” were asking for God’s gracious help to keep my lupus from interfering with my mental processes during my performance.

The result was both encouraging and humbling.  It was clear to me that I must be humble enough to risk making mistakes, in order to cross over to the next threshold of usefulness as a pianist.

Performing butterflies

Finding “the zone”

That afternoon, I was as well-prepared as possible, well-rested and “prayed up.”   A couple of hours before the service began, I slipped onto the platform and sat down at the grand piano to familiarize myself with the feel of the piano.  It was very different from ours at home.  The keyboard was lower, the touch of the keys was softer, the bench was  slightly different height, and the sound and resonance of the notes I was playing were crisp and clean, slightly different than my piano at home.  There were enough different sensations around me to easily distract my focus from the music, but it seemed like my CNS lupus was being quiet.   The piano seemed pleasant and enough different from home to give me a sense of heightened awareness.  I had a “green light” to go ahead.

I realized during this run-through that a great deal of mental discipline would be required during my performance.  I played through the solo I had prepared several times, as well as another short piece that I have worked on for mental contrast.  This short rehearsal helped me minimize and prepare for the distractions and disorientation that might have overwhelmed me if I had encountered them for the first time during the performance.  This dry run also helped me find the mental “place” that I would need to return to during my performance.

There were many members of the church mingling in the sanctuary as they assembled for the afternoon choir practice.  This helped me practice “zoning” them out, and I was pleasantly surprised (and encouraged) that I was able to concentrate on playing the piano without making a mistake when the song leader, and a couple of other people came up to me at the piano and spoke with me briefly while I practiced.

Focus on music, purpose and message

Spiritual preparation and intercession

Although I must admit I was slightly tempted to “chicken out,” it was clearly the time for me to put my apprehension aside, and take the next important musical step.  I mentally rehearsed the pleasantness of my encounter with the sanctuary piano during my quick rehearsal.  I intentionally repeated the idea that I was looking forward the opportunity to play such a lovely instrument (instead of rehearsing  apprehensive thoughts.)

One of the other pianists encouraged me greatly when she enthusiastically expressed how much she was looking forward to hearing me play.

I knew success would require tuning out all other thoughts except the keyboard and the music.   To meet the spiritual and musical goals associated with playing a solo for a church service, I would need to have my mind completely off of myself, not thinking about what others might think of me or my musical skills, risks to my self-esteem or any other self-preserving concerns.  Focus belongs solely on the music, its purpose and its message.  I would need all of my lupus-impaired mental abilities 100% focused on the music.

It is my philosophy that performing music for a worship service is not about the performer, it is about the message of the music and the One being worshiped!  I replayed the mental mantra that playing this piano solo, “Rejoice, Ye Pure In Heart,” was not about me.

This mental and spiritual approach, and the prayers of others who supported me,  helped me keep my focus where it was needed.  My offertory went well, and although I made a couple of “mistakes,”  these were unnoticed by the listeners.   I had a couple of transient moments when my ability to mentally multitask was at its absolute threshold, and I could not quite mentally embrace all the notes on the page in front of me.  I was able to compensate by simplifying notes for a couple of beats, and leaving out a couple of chords in the mental “overload” zone.

More musical adventures ahead


The next adventure is ahead

Feedback I received after the evening church service was very encouraging and supportive, and very honest.  One of our close friends commented about how “focused” I was, and how they are looking forward to the time when I will be able smile while playing the piano, as is my custom when singing solos.  It was easy to admit that  smiling was just one too many things for me to think about during this first public performance.  This important refinement will have to come later, when my skills and ability to split mental focus while playing are stronger.  I was happy to have been musically successful.  Unfortunately, the aesthetics will have to wait a little.

Another pianist complimented me, explaining that she enjoyed my “absolutely perfect” rhythm.   Her unsolicited comment meant a great deal to me.  Other friends expressed their kind compliments and encouragement, many also expressing their surprise to learn that I could play the piano.

I was very grateful to have successfully crossed through this important milestone in my musical piano development.  Getting through these experiences of first public performances, dealing with the nerves, “butterflies” and distractions and learning to keep focus is essential.  In order to cross over to a place of piano competency and usefulness in music ministry, this process cannot be side-stepped.  Every new instrument a musician learns, allows re-experiencing beginner’s humility, and learning these important truths all over again.

This week, I passed through a major musical transition successfully.  Whew!

I am grateful those whose supported my musical adventure emotionally, spiritually and medically.  All three are necessary in my lupus and life support network.  My life goals of piano proficiency, and my specific desire to acquire skill necessary to accompany my husband for his vocal solos, and to teach private music after I retire from my “real” job in a government law office, are now a bit closer.

I am careful to praise the Lord for his goodness and help!  After all, my music is for Him.

The latest “score” in my piano proficiency v. lupus adventure:  Pianist 1, Lupus 0!


Comments on: "CNS lupus, butterflies and a minor milestone piano performance" (3)

  1. […] 11. CNS lupus, butterflies and a minor milestone piano performance – June 2, 2011 – 681 views […]

  2. Julie: I am humbled and honored to be an encouragement to you. It seems we have very much in common, both in lupus and the Lord Jesus! LA

  3. Hallelujah! I just discovered your blog, or should I say, God opened a beautiful window to fresh encouragement. I’ve been searching for a while to find a person or group that shares my love for the Lord as well as the lupus journey.
    I’m 34 years old, married for 7 years, and mother to two handsome boys. I was diagnosed with lupus when I was 13 and had a difficult time as a teenager. Prednisone, plaquenil, methyltrexate, etc. were all a part of my regimen. As a young adult, symptoms decreased and I was able to eventually stop all meds. I was in blissful remission for almost 10 years. In that time, I had a career, got married, had kids, all relatively lupus-free. My OB even suggested, “Maybe you don’t even have lupus!”…hmmm, maybe.
    Well, here I am today, smack dab in the midst of a lupus flare. Daily, memories from my teenage years come flooding back and I’m reminded how difficult chronic illness really is.
    Your joy in Christ is so evident in your writing and is such an answer to prayer for me. To be encouraged by someone who has the same disease I have, but also shares a desire to be pleasing to God in the midst of suffering and trial is a true gift from God.
    I look forward to reading your blog and going on my own “adventure” with you.

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