One Patient's Positive Perspectives

Posts tagged ‘faith’

LA’s Musical Background

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Learning to play

First, I am not the accomplished pianist my husband is.  He can just sit down and play, read pretty much any music, add notes, embellish to make it better than what is written, and think on his musical feet (or perhaps musical seat!)  As for me, first comes being a singer, then a student pianist.  Only after struggling with CNS lupus, did  learning to play the piano in earnest become incredibly important.  In the beginning it was primarily cognitive therapy and a musical test eye-hand coordination before commuting.  With slow improvement a vision for more musical purpose emerged.

Playing the piano started almost ten years ago, not long after a fiftieth birthday.  Although a handful of exceptional pianists are friends of my husband and me, personal goals include the realization not ever being in his or their league!  Still, a love for playing the piano makes it fun.  Learning is slower than might otherwise be for young student of the instrument, it will always be a work in progress.

What high and lofty musical goal is being pursue?  To be useful!  As a church musician, I see that there is always a place for any level of competent piano skills, even if just to improve my effectiveness coaching other singers and helping them learn their music.  If I am careful not to overdo it, my lupus arthritis doesn’t flare and I can play the piano without hurting my hands.

So, perhaps quitting the day job to pursue music more fully isn’t reasonable, but then again, maybe it is!  It won’t be too long before I need to cut my work stress down considerably, especially with my lupus.  I consider retiring from my current day-job in government law, collecting my hard-earned pension and doing something less stressful like teaching private voice, piano and music theory lessons to children, or perhaps work part-time as a school choir director.  Perhaps there should be a shingle hanging from my mailbox that reads, “will teach music for health insurance.”

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California State University Campus

Going into college, my talents and gifts included more voice than money, so following music scholarships was the practical choice.  The first three years of college offered solid voice technique and music theory instruction by wonderful music professors in the music school of a large public university in the San Francisco Bay Area.  Then, in the fourth year followed a music performance scholarship to a private Christian college in Arizona.  This opportunity included touring the U.S. performing 8 concerts each week for three summer months.  This experience helps me realize my lack of stamina required for living as a traveling minstrel.  What a wearying lifestyle!  Realizing this hinted that there were greater physical challenges ahead that a few years later would be diagnosed as Lupus.  But, it was a life-changing and broadening experience that enriched a young singer’s life!

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Arizona Campus

Music has always been part of my life, long before the Lupus diagnosis.  Long before a head-first flight through a windshield herniated three discs in my cervical spine and before lupus arthritis made finger joints balloon, it was still possible to hold a violin under my chin, bending neck to the left.  Hands still could cradle the violin neck with vibrato motion in the left hand and a bow in the right.  Now, that violin sits untouched in its case, proper in the corner by the piano.  My younger sister and her first husband were also violinists, and excelled at it.  It was their primary instrument.  The violin was always my second, and the skill with was mediocre, at best.

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Just couldn’t stop singing…

Singing was a non-stop activity from the time of my early childhood.  Apparently, there are always going to be a few of us musical misfit kids that show up in kindergarten singing their ABCs with a natural vibrato.  Thankfully for me, there was no stage door mother to go along with that phenomenon, and I was allowed to have a normal well balanced childhood!  I was the elementary school librarian’s daughter, so books and homework always came first, before the music.  But, there was always a whole lot of singing going on!

Everyone at my family liked music, was musical or sang, except my older sister.  (She was strictly an artist, but could draw and paint like no one else we had ever seen, except maybe Norman Rockwell.  Her music was played on paper and canvas.)  Our two brothers have a bit of down-to-earth music in them too, between them playing the clarinet, guitar, sitar and some mean toe-tapping harmonica.  Our dad had a smooth rich Baritone voice and loved to break into songs unexpectedly like, “Swing, Low, Sweet Chariot,” or his favorite, “The Yellow Rose of Texas,” and performed for several years in his youth with a barbershop quartet.

But, our mother absolutely loved music!  She played the piano a little, as her mother did, too, and owned some various instruments that she dabbled with, including an autoharp, balalaika, mandolin and a couple of violins.  But, when she sang to us with her sweet pure high soprano voice, we melted. Hers was not a shrill sound like so many women who desperately try to sing in the upper soprano ranges, but rather a warm milk-and-honey sort of lullaby voice with a lilt.  She sang from the happiness of her heart, without affectation or guile.  Her voice was genuine, humble and beautiful.  She could hug you with a song, and then make you feel like singing along.

Mom infected me with incurable love of music and singing.  Family describe me as singing while playing, walking to school, washing dishes, bathing (of course) and every night at the dinner table, my mom would gently repeat a special table manners rule created just for me, “we don’t sing at the table.”  This stern but musing directive would jar me from my humming world of musical bliss to the rude awakening of my green beans, meatloaf and milk.   Not being very objective about my own behavior at the age of five, it’s best to take other people’s word for it.

My Parent's Record Player

My Parent’s Old Record Player

Often sitting cross legged for hours on the hardwood floor of my parents living room, 45 rpm singles would play on an old Zenith monaural record player my parents bought in the early 1950s.  Every note was memorized, mimic each narration and singing along with the different instrumental sounds dramatizing Prokofiev’s “Peter and the Wolf.”  This was my favorite, and sometimes in the quiet I could silently “listen” from memory to the entire score, just as if the turntable on the Zenith were still spinning.  Some days, I would sing along with Julie Andrews’ songs from musicals like Mary Poppins or the Sound of Music.  By the time I was old enough to learn to read, I had already learned every note and syllable of all the 45s in our house.

My mother was an elementary school librarian, so there wasn’t a lot of television.  It was turned on for a specific program, and turned off again.  Most nights, various members of the family were practicing instruments, doing homework or reading books in one corner of the house or another.  Mostly, there was a calm peace filling our home, subdued conversations, interrupted sometimes by one of us playing records from my parent’s diverse collection of 33 rpm albums.  They had just about everything, the popular music included a little Glen Miller, Roy Rogers or Nat King Cole and the “real music” included a broader selection of symphony and chamber music including Beethoven, Tchaikovsky, Brahms, Berlioz, Bach, Mozart, Haydn, Handel, Puccini and of course, my favorite Prokofiev.

The advent of rock music seemed respected and nominally welcome at our home, and was tolerated in limited volumes and time frames, as my older siblings embraced contemporary music of the late 1960s and early 1970s.  I didn’t get much past the Beatles and Peter, Paul and Mary into the foray of rock music (if you can even call them rock by today’s standards) and was once again sort of a musical misfit, or simply put, just not “hip” in the hippie age.  I guess I never got the memo, or just forgot to read it.  I was too wrapped up in my love of the classics and by high school was studying Italian and German art songs and arias from composers like Scarlatti, Puccini and taking parts in musicals plays such as Oliver, Oklahoma, Carnival, Little Mary Sunshine and others.

San Francisco Symphony at old War Memorial Opera House on Van Buren St.

San Francisco Symphony at the old
War Memorial Opera House, Van Buren St.

Growing up, we sometimes attended the Oakland and San Francisco Symphonies with my parents, and the love of music grew.  As an adult, my music is pretty much performed only in the church setting, as a member of our church choir, as a soloist, as a duet partner with either my husband or a dear friend, in an occasional ensemble group, or playing the piano for services my church holds for seniors in independent and assisted living residences in our community.  Recently, ab opportunity to serve with playing the piano for an entire church service was a nerve-stretching challenge, and a new milestone in this personal musical ministry journey.

[I posted this a couple of days ago, by mistake, before it was finished and edited.  My apologies to those of you who received the rough, unedited version in your email.  WordPress has had some changes while I was on a writing sabbatical, which I am still learning to navigate.  Thanks!  LA]

 

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Lupus in the light of a rainbow’s promise

wp_20170123_16_24_13_proOften, many days go by when looking outside at the nearby trees is overlooked.  The cold rainy day had soaked everyone as they made their way to the office.  Lupus grumbled loudly as aching joints and stiffness responded to the damp chill penetrating the office.

The thermal glass was much too thin to block the deep chill penetrating the wall.  The storm blanketing the mountains to the north with deep layers of winter snow brought a biting chill to our arid desert valley below.  Pelting rain struck the office balcony and trees below, as the sky gave a message of promise read by everyone standing there in awe.

320px-Butterfly_sikkimDark gray clouds hung heavy in the eastern Arizona sky as a billowing contrast to the brilliant brush stroke arc of colors swept across the sky.  The southern clouds even carried a faint echoing hint of a barely perceptible second bow.  Standing where an outstretched hand could touch the drenching rain, the combination of invigorating chill and the intensely beautiful sky snapped away the lethargy of the  aching rainy day.

wp_20170123_16_23_49_proRemembering the story of the first such rainbow adorning Noah’s sky refreshed a keen awareness of God’s many promises spanning the ages: never to flood the whole earth again, His Word delivered through holy men of old, the birth of a Savior, and the cross and resurrection that promise new life to those who believe and receive Him, and even now the promise of forgiveness and mercy while adventuring toward a heavenly future home.

With a heart full of these thoughts, today’s rainy day aches of Lupus were somehow dwarfed under the shadow of grand colors of promise hung over skies of history.  A deep cleansing breath and lingering sigh were the only utterance that really described the sight.

The duties of the day soon called out the time to go back inside and into the office kitchen, where a fresh cup of hot coffee waited to warm and nudge persistently back toward the reality of waiting duties on a desk inside. The image of that gorgeous sky evoked thoughtful quietness as I sat down again to view the distractingly beautiful scene outside my office window.

Lupus Adventures Sojourning in the Land of Learning

My Cheering Section!

The Whole Cheering Section!

Finally done!  A two-year long scholastic adventure closed with long-awaited pomp, circumstance, and enthusiastic celebration of family and friends.  It is finished, and the Lupus Adventurer is returning to her blogging home, after sojourning long in the land of learning.  Graduation came as a sweet finish to a college degree put on hold for over thirty-five years.  Returning to college after a 34 year gap was a deeply fulfilling, challenging, and mentally invigorating experience.  Concern that the risk of lupus flares might increase with the added stress of school studies fueled some real trepidation at the beginning, and could have been a valid reason not to try.  However, after being on Benlysta infusions for several years, my health had never been more stable.

Over the years our children grew up, married, and five beautiful grandchildren graced our lives.  Finally health, family needs, and personal priorities were in a place where it made sense.  Personal values put the needs of children and family first, so with great peace of heart college held lowest priority.  Just like many other lupus patients, the years are peppered with various milestone health challenges.  Always thankful for the education received over four years of attending college, a lingering desire to tie a bow on the unfinished degree never lapsed.

th2C28Z9N0With all the credits aging quickly, after ten years had passed without going back, traditional college degree programs required starting all over again.  Until schools began offering degree completion programs, there was little opportunity to consider reviving a quiet personal dream to finish it.  By the time our children were in school, my career was in full stride and lupus was flaring as an unwelcome life companion.  Keeping  up with the demands of home front and work took daily doses of love from husband and family, and the abiding strength gifted though the daily grace and mercy of a walk with God.

With a husband’s support and encouragement from all the corners of life that mattered the most, it is finally done.  After deferring my desire to finish my college degree for many years due to the events and obstacles of life, choosing the priority of putting my husband and family first, and waiting contentedly upon God unless and until He showed me a time when it was right for me to do it.

So, I prayed my way through countless long nights of arduous study, and stretched my brain and heart to embrace and comprehend new ideas and understand new concepts.  Scores of papers were written, supported by hours and hours of academic research.  This was the type of college experience that made me better and my work, and helped me professionally grow.  My husband, family, friends, employer, and co-workers cheered me only continually.

Senior year of high school

College was harder work for me being a lupus patient in my late 50’s who works a full time in government management.  My sleep hours were often deprived, and the hours of study almost always went beyond midnight.  As a result, perhaps, there were some increased health challenges along the way.  But, now at age 59 it is clear that it was a deeply rejuvenating experience.  Study at night after my demanding day job, together with class time, reading text books, and writing innumerable papers were difficult at times.  During the second year of my studies, our son and his wife and family moved in with us and we spent a blessed year as a full household of nine.

Our five young grandchildren brought joyful love and laughter into our hearts, and they prayed for me and encouraged me daily with their hugs and kisses, warmth and smiles.  I felt like my cup of family love was overflowing and spilling out all around me – my heart was full of joy, despite the normal stresses and challenges of sharing our household.  We got to know and love our grandchildren even more deeply and intimately that was ever before possible, and so this will be an ongoing gift to all of our lives for years to come.

 

Lupus adventures in accidental forgiveness at the side of the road

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Softening that first impulse… Stop, breathe, think and pray!

Accidents happen!  For emotional and spiritual health, it is important after a traumatic injury to start by sorting out emotions and clarify the difference between fault and malice.  If someone was at fault due to negligent, careless, or otherwise the unintentional actions causing an injury, for our own health and peace of mind we should try to forgive them. They did not mean to cause hurt, as there was no malice in their actions.

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Admitting responsibility

We should not confuse forgiveness with the need to hold others responsible for the results of their actions, but we should understand we will only hurt our own heart and spirit by rehearsing and feeding anger and resentment toward someone who caused our injury.  Imperfect humans cause accidents, and we should see them as simply that.  Imperfect.  Human.

Amazingly and unexpectedly, healing began right at the scene of a recent accident, when the man who caused it stood there by the side of the road, holding out his hand with regret on his face.  Hands were shaken and the lament in his eyes was clearly genuine, his words of apology were real, and his full acceptance of fault meant only one thing.  He was concerned with my wellbeing, took responsibility for his actions, and deserved nothing short of immediate forgiveness.

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Expressing a response of kindness

Thanking him for his integrity and sincere apology, it was somehow easy to  shake his hand and respond with a message of kindness.  Agreeing the insurance companies would work out the financial issues, our clear understanding was that the gentleman was clearly at fault.  I felt compelled to assure him of the absence of resentment or anger toward him.

As we shook hands again upon leaving, our polite agreement was that it was just an accident, and that it had happened because we are imperfect and make mistakes.  It was a heavy, bumper-to-bumper rush-hour traffic jam, and we were grateful only the two of us were involved.  Accepting this perspective on the situation helped immediately dismiss strong negative emotions and shift attention to thankfulness for the good aspects of the otherwise generally negative experience.  Considering that we both walked away in “one piece”, no one else was hurt, and we amicably communicated at the side of the highway, we had much to be thankful for!

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Bright spot in memory of accident

In the midst of the early pain of injuries, the gentle human connection with the other driver remains now a little glimmering bright spot in memories of the traumatic experience.

Sometimes we feel justified in our anger, but we are not forced to exercise that “right”.  If someone causes injury for reasons such as mal intent, criminal negligence such as drunk driving, over aggressive driving, or road rage, it might still behoove us to show charity of heart and pity them for their poor self-control and lack of wisdom, and not focus the inwardly destructive potency of hatred upon them.

Many times these infractions ultimately put the erring doer in jail, with severe legal punishment, fines, and restitution.  We should choose to let that be enough.  God’s important message to us in the Bible on this issue gives us that better perspective.  “Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, vengeance is mine; I will repay, saith the Lord. Therefore if thine enemy hunger, feed him; if he thirst, give him drink… be not overcome of evil, but overcome evil with good.” Romans 12: 19-20.  The negative emotion of resentment hurts the one who hates more than it affects the object of such feelings.  Just as forgiveness is emotionally and spiritually healing and freeing, resentment and hatred bring a painful grip that hurts and damages the hater more that the hated.

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How many times must I forgive?

Jesus said we should forgive our brother that hurts or wrongs us, not only seven times like an inquirer had suggested to Him, but instead we should forgive them “seventy times seven”.  That comes to 440 times!  It seems pretty clear that He did not infer that we should stop forgiving the 441st time someone wrongs us, but perhaps by then we will have well exercised our ability to forgive with reasonable success.

thL96KOAO8While it is impossible to count the number of other people throughout time who have ever lived on the face of the earth, Jesus bore the sins of all of us in His body on the cross, that He might bring us to God.  He offers lasting forgiveness to us, not at the side of the road, but at the foot of the cross.  If we will accept his sacrifice there for our own sins, and receive his offer of love, forgiveness, and eternal life, we can walk away spiritually healed and whole.  The apostle Paul explained, “for the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord” Romans 3:23.

The body will heal, although lupus may flare after trauma, that will pass in time.  More important than the healing of our body, or any flares of chronic illness such as lupus triggered by trauma or stress, is the healing of our heart, soul and spirit.  Sinners like me who are saved by God’s gracious undeserved kindness, can choose to extend the healing of simple forgiveness to fellow sinners who happen to collide with them on the roadway of life.  With God’s help, I can, too!

Forgiveness does not happen by accident, but rather it is a choice.  I have made mine, and as a result, am well on the road back to health!

Lupus and not sleeping but still singing in the rain

Rain splashing on the window

There is nothing quite so satisfying for a college student as getting the paper finished, just right, proofread and printed — ready to hand in the next day.  Pleased with self and ready to snuggle into bed for the night and sleep in the sweet peace of readiness.  All is well as evening medications are downed, slumber time routines done, and tucked into the covers.  Here in the darkness, listening to the rain pouring outside in the chilly evening just beyond the bedroom window, soothed by the quiet murmuring of rain splashing in puddles and gently sloshing against the glass.

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Living by the ocean means rain!

There’s no rational explanation for why the rain brings on such a quiet excitement, except perhaps so many childhood memories wrapped up in the blanket of glorious rainy days.  Living by the ocean will change anyone’s opinion of rain deeply, to either detest or delight.

Rain triggers the memories rushing back to the carefree, worry free days of childhood.  Skipping along in the rain, splashing in puddles, emulating Gene Kelly while he danced and sang.  Perhaps my childhood motto was “singing in the rain” since I loved the driving, pouring, pounding storms the best.  There was nothing sweeter than strolling in the rain, arm in arm with mom!  Sometimes, we would sing as we walked… precious memory.

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Over this and loving the rain!

Even so, ever so briefly my fascination with rainy days and nights was shaken, after a violent monsoon Labor Day thunderstorm storm sent a towering 80 foot Eucalyptus tree into our house a half-dozen years ago.  But, over the trauma now, trusting the rain returned.  Although briefly shaken, friendship with stormy weather is restored!  Back to lacking reason to adore inclement weather.  Why in the world is its allure so great?

It is not logical to love the rain

It really is not logical!  Lupus arthritis doesn’t like the rain.  Neither does the accumulation of osteoarthritis that accompanies a history of several joint and spine traumas.  So, on nights like this when the bed is comfy and warm, but body pains just will not permit sleep, it makes no sense to like the rain.

I curl up in the dark praying for those I love, some far away and some very near.  Trying to make good use of this time to commune with the Lord, intercede for others, and redeem some good use while being frustratingly awake.  I know He hears in the dark, and perhaps the sole reason sleep eludes is to pray for God’s help for another.  This is reason enough to rest here all night in the dark without sleep.

Finding joy in the rain!

But, still laying here in pain brought on by the barometric shift, it still seems wonderful, and the hours are occupied sleeplessly listening to rain, rain, and more rain.

Others all around earlier today grumbled as they darted from car to office.  But this silly gal’s reaction?  Loving it, senselessly, and determined to find joy in the gloriously pouring rain.

Rain, rain, don’t go away…

At last sounds of morning begin to stir in the neighborhood around the house, and out on the street early commuters start their cars and the noise of splashing traffic sends a signal to get up.  Not the first or last slumber-less night, but at least there was a symphony of showers to not fall asleep to.

Goodnight!  Its morning!

2014 in review – Lupus Adventures Between the Lines

WordPress.com prepared a 2014 annual report for Lupus, the Adventure Between the Lines…

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.

Thank you!

Thanks for reading!

A very special thank you goes out to regular readers and other visitors who have shared their lupus adventures, challenges, comments, emails and various thoughts here.  Every reader contribution has made a difference to me, and other readers have expressed how comments often strike common threads with their own experiences.

2014 was a year of great personal ups and downs, including the difficult loss of my father on the evening of July 4th.  Amid the fireworks of Independence Day, after suffering with Alzheimer’s for five years, my father had his own unique independence day of release from that very difficult struggle.

July was indeed the low point in being able to share my lupus adventures, as I struggled with grief and the needs of family and his affairs, writing was pushed aside.  Only one post was published during the month.  The many kind words and thoughts of condolence received in comments and emails from many of you were so appreciated!  You helped make a difference in my grief experience, encouraging and touching me greatly.

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Thankful for each of you!

It is important to take this opportunity to stop and share thankfulness and gratefulness for being allowed to share this great lupus adventure with each of you!  My continued hopes and prayers are that my pondering and perspectives on lupus and its impacts will help you, too.

I have also been blessed to hear from those of you who expressed a common fellowship of faith in Christ, and appreciated you sharing your thoughts and experiences.

Whether your are a lupus patient or are impacted in some other way by lupus, I am deeply humbled and honored that you have visited here and shared precious moments of your own journey with me!  May 2015 be a year of many blessings and few flares for each of us.

Lupus and the Year of Unseen Adventures Ahead

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The year before us has promise and hope,
waiting outstretched just ahead,
Month after month, new choices to make,
each day as we rise out of bed.
Where will our road lead, where will we be
when a year rolls around once again?
Will there be progress, victory, growth,
or just stuck where we always have been?

Challenges, true are no easy path,
worth striving to traipse intentionally well,
In sickness and health, whichever shall come,
it’s a marriage of sorts to be ill.
Unwilling partners, my lupus and me,
but still joined at the hip and heart,
Morning by morning, reminded it’s there,
but wishing that it just would depart.

Some choices just cannot be made,
like whether to be an autoimmune me,
But others we exercise with volition and grit,
to make each day the best it can be.
By the end of this new year, we can purpose to say
that we’ve done better at last,
Taking control, living wisely and well,
making the most of the year that’s just passed.

So this day is the beginning of a fresh new walk,
through our adventures yet unseen,
Promising the mixture of challenge and joy.
When its done, what will this year have been?
Hoping, praying earnestly for myself
and for the journeying companions with me,
That God will enable us to triumphantly go,
and not under, but above our circumstances be!

By, Lupus Adventurer
© January 1, 2015

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