Cue the trumpets!

My wife Peggy grew up on a small lake north of Chicago.  The brick house had a long, sloping back yard bordered by giant oak trees and a split rail fence.  A slightly wobbly, wooden pier jutted out into the lake, making it the perfect launch pad for children to come careening down the backyard, across the pier and into the cool, fresh water with gleeful squeals, and splashes.  The small sandy beach, with its gentle lapping waves, and afternoon shade made for ideal imaginative play.  And as the children aged, the excitement and laughter flowed from a used motor boat that was more than adequate for all manor of water-skiing adventure.

This was Crystal Lake.  This was middle America at its summer best.

The decades of family gatherings at Crystal Lake are now part of the family lore, embedded in memory across generations.  Stories are told and retold with any number of embellishments for sure, especially when water skiing is involved. 

Yesterday was Easter Sunday for most of Christendom.  It is a Sunday of exuberant music and pageantry, with brass choirs, and soprano descants sung to familiar hymns.  It is the Grand Finale of Holy Week.  

For many, Easter is one of the two Sundays they appear in church.  Attendance is universally overflowing, and preachers everywhere are challenged to deliver a Home Run Sermon.  

Ask a preacher and they can enumerate any manor of challenges for Easter Sunday sermonizing.  Imagine having to craft a message that speaks to those who know the back story, retold throughout Lent, and those who show up for the music.  (You know who you are.)

Jumping to the end of the Easter story can lead to confusion and dismay.  How do you make sense, never mind celebrate, a prophet's gruesome, slow, death on a cross, in a trash dump, 2,000 years ago?  Is it enough to proclaim that a God/Man rose from the dead?  Resurrection from the dead is, after all, a basic tenet of the Christian faith, and in Jesus's case, it is a spectacular miracle.  

Resurrection can be understood as the end of the story... believe it, don't believe it...  it's up to you.  Either way, enjoy the music.

Those of you who were in church yesterday may have noticed, as I did, that there was plenty of talk and singing about death.  Death on the Cross.  Vanquishing Death.  Freedom from Death. Transcending Death.  No more fear of Death.

And don't forget the empty tomb, which is also really sad, until Jesus speaks to Mary.  Then we cue the trumpets for a fanfare and a final hymn.

The back story to the crucifixion and resurrection reminds believers of the intimate conversations, the shared meals, the creation of ritual, the reversal of roles (foot washing), and the withdrawal for solitary prayer and contemplation that precedes Jesus's arrest, trial, and death.

We need the back story to understand the end of the story.  We need the entire narrative to make sense of the ending.  If we jump to the end of the story, we miss the deeper meaning of the story.

For me and for many Christians, resurrection is not just an historical event.  Resurrection exists today in shared meals, rituals, reversal of roles, intimate conversations, worship, and solitary prayer and contemplation.  Resurrection is an on-going narrative of God's presence and love as a Reality in daily life.

Father Richard Rohr says, "The only way I know how to teach anyone to love God, and how I myself seek to love God, is to love what God loves, which is everything and everyone, including you and including me!"

Love everyone and everything, even those places and people who have passed.  Gratefully, our narratives continue to evolve, and live on.  

Alleluia!

Cue the trumpets.

Introducing JimBob and PeggO

Growing up I never considered Jimmy a nickname.  An uncle once tried to call me Jimbo, which I flatly rejected.   Jimmy was my name.  I loved the way it rolled off my tongue: "Jimmy Ogan". My name had symmetry and a hint of alliteration. 

In middle school, all the Jimmys became Jims.  And I was never Jimmy again, except to family of course.

Somewhere along the way JimBob popped up as a term of endearment.  One of those random attempts at verbal affection.  No one actually  refers to me as JimBob, but I have always liked the sound of it. 

PeggO is another random attempt at verbal affection.

Thursdays at UVA Medical Center in the Department of Neurology are ALS clinic days.  A multi-disciplinary team of clinicians meet with ALS patients and their families to provide highly coordinated, expert care.  Patients welcome expert after expert into their exam room.  Imagine the patients holding court, receiving their trusted advisors one after the next.   It's great.  And it's one of the reasons that UVA is named as a Center for Excellence in ALS care.  

ALS clinic is also a long morning.

Yesterday was ALS clinic for JimBob and PeggO.

PeggO rises early on ALS clinic days, because JimBob needs to eat before clinic, and he needs snacks to get him through the morning.  PeggO makes soft boiled eggs and toast before clinic.  She has decided on 4.5 minutes for the perfect egg.  She's right, of course.  It's perfect.

Snacks for clinic include peanut butter, crackers, oranges, a banana, and shelled pistachios, because they are JimBob's favorite.  In between advisors, PeggO offers snacks.  The exam room invariably smells of oranges and peanut butter.

ALS clinic is an event for JimBob and PeggO.

Maybe you have noticed that exam rooms now have wide chairs that look like loveseats, because many American patients need a loveseat to sit comfortably in a chair.  They should probably offer loveseats on airplanes.

JimBob and PeggO love the loveseat.  They park them selves in the loveseat facing the computer station to hold court, snacks at the ready.

PeggO records every detail in her ALS journal.  She also consults notes from literature reviews, webcasted lectures, and general reading.  She knows JimBob's weight and Peak Expiratory Flow from every visit.   

JimBob provides comic relief.  Every Royal Court has a jester.  JimBob likes being a cheerful patient.   

PeggO and JimBob make an effective team.  The advisors leave smiling and grateful for the opportunity to help.  PeggO and JimBob leave feeling grateful for expert, compassionate care.

The ALS advisors had nothing but good news yesterday.  Functional status measured by the ALSFRS-R remains unchanged, Forced Vital Capacity remains above 100% predicted, and everyone was delighted to hear about the positive effects on JimBob's energy from the AMX00035 he is now taking off-label.  Everyone applauded JimBob and PeggO for running 2-3 miles mosts days. JimBob could do more stretching, and he could eat more protein.  Be sure PeggO has taken note of these necessary improvements. 

As for Righty and Lefty.  

Righty rose to every exam request in good humor and without fanfare.  Lefty struggled to demonstrate strength and coordination, especially in the thumb and between the ring and middle fingers.   Lefty gave it the old college try, and welcomed a gentle squeeze from Righty, a hand hug, after the exam.  God Love ya both.

Every story has a beginning, a middle, and an end.  Our ALS narrative is just beginning.  We are meeting the characters, identifying dynamic tension, developing the plot and a vision for the story arch.  Beginnings consume abundant energy.  Snacks and hugs are essential.

Morning hymn

Our deer love a fresh tulip bud.  It seems there is nothing quite like it in Spring.  My contemplation garden is now a collection of straight green stems standing among a bed of abundant tulip leaves.  Except for this one.  The lone survivor.

I said to a fellow gardener this weekend, "I don't know why I even plant tulips."  She suggested I put a row of tulips in my fenced vegetable garden.  That's what she does.  Brilliant. And wise.

This morning the sun landed on this bold tulip at just the right slant, and the scene was far more captivating than this photo represents.  The redness blazed forth with uniqueness and vibrance.  The petals shimmered.  

In due time, our lone tulip began to sway.  Ever so gently, this gorgeous flower rocked back and forth.  Was it moaning?  Its petals are not long for this world.  Or, was this lone beauty humming a morning hymn?  It swayed and I lingered with a loving, grateful gaze.  

Soon enough, I felt a sweet brush of air move across my face.  I cannot call it a breeze. The air was just enough across my face to accompany a tulip swaying, humming its morning hymn.

My first time having ALS

This is my first time having ALS.

Consequently, it has been challenging to answer many of the questions put to me routinely.  Quite often, I have no language to describe my physical sensations and emotions, much less the inward journey of my soul.  

When children are too young to have precise words to describe difficult emotions or bodily sensations, we sometimes ask them to describe the feeling as a color, or as an animal noise.  The sad feeling of grief becomes ghost gray, or dark purple.  The rage of abandonment is a roaring tiger.

As an experiment, I am assigning colors and music to opaque questions and their poorly formed responses.  Frankly, it seems better than remaining mute and perplexed.

But first a word about Dr. Google.  

If you suspect that you might have the signs and symptoms of ALS, I do not recommend consulting Dr. Google.  Check with a real doctor, even, and perhaps especially, if you ARE a real doctor.

Consulting Dr. Google about ALS leads to harsh statements about impending disability, and a shortened lifespan.  If you are scientifically, or medically minded you will be disappointed to learn that the disease mechanisms and treatment options for ALS are slim and not well-described. (Color: maroon; Music: anything in the key of B minor) 

My initial doctor's appointments were aimed at uncovering the source of my symptoms (constellation of symptoms):  

• muscle twitching (fasciculations), 
• jumpy legs and arms (hyperreflexia), 
• shrinking arm muscles (muscle wasting), 
• weakness in my left hand when writing or buttoning a shirt (progressive weakness), and 
• uncoordinated, slow finger movements (Dysdiadokinesia)

If you consult Dr. Google on 3 of the above 5 symptoms you will learn about ALS. So, you ask, why did you bother to go to all those doctor's appointments?  Uhhh, we like doctors?  We trust them to help us.? (C major; Kelly Green)

In general, people ask questions about ALS as gently as they can.  I appreciate the inquiry and their sincere interest.  I really do.

"How are you feeling?", they say.  (C minor and slate blue on some days, E flat major, and chartreuse on others)

"Say more about what you call buzzing, is it more like tingling?" (hibiscus red, F major, definitely F major, or maybe gargoyle grey and a tenor sax wailing the blues)

"How was your time with the kids out West?" (yellow, like a ripe lemon just off the tree; and A major is about right, maybe with a modulation to D major)

Isn't this fun?

As for my soul, and it's language, color, or music...

Actually, I'm OK with a silence of the soul for now.  It's not quite intermission.  It's more than a half-note rest.  Maybe I'm in the pause between symphony movements.   Maybe it's the color of dawn in June.  See what I mean?

I'll need time and emersion for fluency in the language of the soul.

But, honestly, how can I keep from singing?  (G major; Butterscotch)

https://www.youtube.com/watch?v=qWVmJdZVvKE

Introducing Lefty and Righty

 It's time to introduce you to the story of Lefty and Righty.

The year is 1956.  The place is the sweet womb of one Bernice Jean Galbraith Ogan, a 27 year old school teacher in Lorain, Ohio.  You'll remember Lorain, for its famous, polluted Black River that flamed its way to the national news.  I would also like you to know that Lorain is the birthplace of Nobel Laureate Tony Morrison, and actress Milica Govich.  No doubt you'll remember Milica from her roles on television and Broadway, and famously as Ansel Elgort's mom in the blockbuster movie The Fault in Our Stars.

Back to the womb.  

You see, Lefty and Righty are fraternal twins.  They've been a duo from the very beginning,   At seven months, they were passing banana bits to each other for fun.

The twins have always been happy to work and play together. Climbing trees, riding bikes, eating a field-fresh ear of hot-buttered corn at a picnic in July.  These two go way back with fun and festivity. 

Bernie, as she was known to her friends, loved Lefty and Righty equally.  She clipped their nails with great care, and inspected for cleanliness before meals. She taught them to move a chess piece, and shoot pool on a revered table in Mr. Ryan's basement. She eventually gave up on anything that involved hand-eye coordination, but to be fair, that was not the fault of either Lefty or Righty, 

Bernie, and her father before her, were known for being left-handed.  So, when Lefty preferred to hold the spoon, then the Crayola, I suspect that Bernie was silently well-pleased.

Lefty emerged as the one with notable dexterity at any keyboard.  His bass-line on the Hammond B3 could astonish, and his speed with A,S,D,F was truly remarkable.  Righty, worked to keep up with above average success, and remained content with J,K,L, semi-colon.  Lefty couldn't help feeling the tiniest bit sad for Righty, regarding the semi-colon. 

Let's keep this next part to ourselves, since now is not the time to reflect on past failures. The truth is that Lefty could be a bit of a show-off.  For example, the repeated errors in typing class were due to Lefty's competitive edge to exceed 50 wpm.  Lefty has always been the one who needs to be convinced to slow down.

As life for the twins poured forth, Lefty would emerge as the favored one.  

Lefty wears the ring.  Lefty pens the letters.  Lefty strokes the hair of children at bedtime.  Lefty uses the fork, and chops the onions.  Until, recently, Lefty's index finger pushed seeds into the fresh, cool soil each Spring.

A year ago, Lefty held Bernie's left hand as she lay dying.

Lefty has led a life of privilege.  And Righty has been, well, right there, ready to help.  Righty held the onion to be chopped.  Righty held an equal number of children's hands to cross a parking lot.  Righty happily joined in push-ups, and swimming across Walden Pond.  Righty has always been grateful to tag along with Lefty, who has always happily taken the lead.

If the symptoms of ALS had started with Righty, instead of Lefty, the diagnosis may have been longer in the making.  Slight weakness in Righty's thumb and index finger may not have manifest as a problem, like it did for Lefty trying to write clinic notes, and prepare vaccines in syringes.

Dysdiadokinesia is the medical term for the inability to perform rapid, alternating muscle movements.  It is a hallmark of ALS, along with muscle weakness and fasciculations (muscle twitching).  The neurological exam tests for dysdiadokinesia by comparing the right and left hands.  The examiner asks the patient to wiggle their fingers, and to tap the fingers against the thumb of the same hand in rapid succession.   Lefty, of course, has always excelled at this task, so much so that many a doctor has worried about Righty.  That is, until I reveal Lefty's privileged place in the world.

ALS doctors who had never met Lefty and Righty were reassured by Lefty's lack of dysdiadokinesia, but I knew.  Lefty knew.  So did Righty.  We kept quiet for awhile.  After all, what was there to do?

In an unassuming way, Righty has learned to button a shirt alone, to brush my teeth, and shave my face.  Lefty was downhearted at first, maybe still is.  But Lefty is also grateful for Righty who has never been one to brag about brushing teeth, or pushing the start button on a microwave.

What has become clear to me as ALS progresses, is that Righty and Lefty are in this together.  Righty is quite happy to hand Lefty the pen that would otherwise slip away from Lefty's loose grip.  And Lefty, God love Lefty, is honestly growing more comfortable receiving the help, because it means the two are still in this as a team, even if some of their roles are shifting.

For now, as Lefty's function declines, Righty is there for assistance and comfort.  I've noticed Lefty settling into Righty's palm, or lacing fingers as a way to settle into my lap, like the way Peggy and I spoon to sleep, night after night.  It's an act of ordinary tenderness.  It's an unconscious kindness.  It's love manifest in the reality of ALS.