ALSTLS

ALS is always a grim tale to tell, and to hear.  Sorry.  

What if we could tell a parallel ALS tale that was the opposite of grim?  I have an idea.  Read on.

ALS, Amyotrophic Lateral Sclerosis, is generally defined as a progressive, neurodegenerative illness with no cure.  Often, this straightforward definition is embellished with a clause or two: 

• eventually leading to the inability to walk, talk, swallow, or breath.  
• including complete paralysis with intact cognition.
• being 100% fatal with an average life expectancy of 2-5 years. 

ALS is commonly referred to as a brutal disease; the disease most feared by doctors.

As I mentioned, it's a grim tale.  Sorry, again. 

Did you know that the functional decline that accompanies ALS is scored as a way of tracking the progression of the illness?  There is a 12-item functional rating scale called the ALSFRS-R:  48 points = A+ = no disability.

See details here.

• Speech
• Salivation
• Swallowing
• Handwriting
• Using utensils
• Dressing and hygiene
• Turning in Bed
• Walking
• Climbing stairs
• Dyspnea (breathing hard with activity)
• Orthopnea (difficulty breathing while lying down)
• Respiratory insufficiency

I am currently a 43 or 44.  I was a 41 or 42, until I taught Righty to use a pen.  Honestly, I could probably be a solid 44, if I used a rocker-knife.  After all, if we can enhance or adapt function to increase inclusion and participation, we diminish the disability.

It is worth noting here that Mr. ALS's march toward disability does not necessarily include mental, emotional, or spiritual decline.   ALS causes motor nerves and muscles to die. The thinking-mind remains completely intact.  Spirit, drive, passion, motivation, personality, the ability to give and receive love, all remain in full force.

Let us remember that intact abilities often compensate for innate or acquired disability.  People who are blind develop an exquisite sense of touch, smell, and hearing.  Kids with spina bifida who have never had use of their legs learn to scoot around as fast as their playmates and siblings.

What Lefty is losing in function, Righty happily takes on with aplomb.  

Joining the ALS community through organizations like I Am ALS, I am inspired by a fierceness of spirit, a courageous drive for change, a passionate desire to leave the world a better place.  These ALS champions and their loved ones are my new team.  Everyone is welcome.  Everyone gets into the game.  Kindness is not a zero-some proposition.  Love abounds.  Courage and hope prevail.

I understand the need for the ALSFRS-R.  But, wouldn't it be great to have a partnered scale to measure positive progress?  We could call it the ALSTLS.  The ALS Turbo-charged Living Scale, measuring:  

• adaptability
• humor
• kindness
• compassion
• hopefulness
• resilience
• altruism
• passion for creating change
• fierceness and drive
• advocacy for self and others
• ingenuity
• vision and meaning

What do you think?  Great idea, right?

The media

The Hummingbird Fund is gaining notice which makes me really happy.  Our mission is clear, and dare I say boldly stated:

Ending ALS. Starting with all of us.

The Hummingbird Fund stands on three pillars: access, innovation, and advocacy. We are on a mission to end care gaps for Virginians living with ALS, accelerate innovation to improve quality of life, and advocate for legislative action and research to end ALS. Through agile grantmaking, we work to help ALS patients and their families live full lives. Join us to help end ALS in this decade.

Hummingbird offers me the opportunity to use the experience I have accumulated from decades of work with families facing the enormous challenge of caring for a child with significant medical complexity and disability.  Moreover, I am lovingly joined by my family and hundreds of others whom I am calling the Hummingbird Champions. 

When invitations from the press started to roll in, you might imagine I would be delighted to share my passion for the vision of the Fund.  

My immediate thought was that this kind of carpe diem would be best delegated to my highly photogenic, uniquely poised, well-spoken family.

They declined, saying I was the man for the task.

So, I keep saying yes.  And you know, with preparation and some practice it gets easier.  I now see the media as a chance to share the ALS story, which has been side-lined for almost 100 years. 

Recently, Will Selden, a podcaster at the Virginia Health and Hospital Association, began his interview, asking, "So tell us, how are you doing these days." 

The question caught me off guard with its humanity. I thanked him for the question and its kindness, and then I answered as I almost always do, saying, "Oh, I'm fine." In this instance I elaborated with mention of the abundant love surrounding me.

I mean, no one wants to hear about me struggling to learn how to butter toast with my right hand, or the disappointment and fear associated with the gait-related side effects of edaravone, a medication I've been waiting to try for months, and one that required no less thank 20 hours of my time in the way of prior-auth's and payment schemes.

With the media I stay close to my talking points, allowing the daily realities to swirl like an imaginary cloud bubble above my head.

Some questions are fun.  Here's one that Will Selden used to close out our interview.  Feel free to try this at home and let me know your answers.

If you were stranded on a desert island, all alone, what one book (aside from the holy text of your choice), movie, and recording would you want to have along?

Ok, so here goes.  I will mention that I decided to go for diversity:

BOOK:   Mirabai Starr's recent translation of Julian of Norwich's The Showings

FILM:     Notting Hill

MUSIC:  Nina Simone "Pastel Blues"

Will Selden had one more question before signing off.  He asked for a bit of advice I had received that was worth passing along. My answer came immediately to mind, but I decided to place it in the context of a brief story.

When I was first diagnosed with ALS, I was at sea with knowing how to integrate ALS into my psyche, into my soul, really.  I revealed this awkwardly to a friend, who took a moment, then looked me straight in the eye, and with a gentle smile, said, "Just be yourself, Jim.  All you have to do is be yourself, and the rest will follow."

Quick Check-in with JimBob

 

--It's time a for a quick check-in with JimBob and his pal DeltaMae.

--JimBob, tell us how you're doing these days.

"First, let me thank you for not tilting your head to one side while asking how I'm feeling.  It's a fair question, but, Lord, it's hard to answer.  As someone living with ALS, I never know how to respond to the 'feeling' question.  Emotionally? Physically? Mentally? Spiritually? 

--I can see that.

"I have relevant data to share from each domain, but where to begin."

--uh huh.

"Most days I just smile and say, 'Oh, I'm fine.'"  

--yeah, I get that.

(Silence) 

--JimBob....

"Yes?"

--JimBob, back to the question:  how are you doing? 

"Besides fine?"

--Yes, besides fine.  Tell us how you are doing?  We care about you. We truly want to know how you are doing.

"Well, I'm not happy about this ALS mess."

--I imagine not.

"And, I'm not depressed or anxious.  Praise God for Zoloft."

--The world is a better place since Zoloft.  I'll grant you that.

"I have a new brace for Lefty which makes it 100 times easier to type."

--Excellent.

"Physical therapy is fixing the adhesive capsulitis in my left shoulder, so I'm not in pain anymore, and I'm sleeping all night with Peggy in my arms.  I can wash my hair with both hands again."

--Terrific.

"I've written about my double-life."

--Yeah, that was a tad dark.

"I know.  Sorry about that."

--No worries. You're good.

"The ALS falderal is ever-present, you know.  It has a way of being a constant storm."

--ALS falderal?

"The forms, the emails, the decisions, the disappointments, and all the problem-solving with lousy options."

--Oof.

"Yeah, sorry."

--No worries at all.  Sounds like a ton of work.

"And stress.  Thank God for Peggy."

--Amen to that.  And DeltaMae.

"DeltaMae loves our morning contemplation.  It might look like she's sleeping, but I know better."

--Right.

"I'm learning to slow down, and to welcome joy."

--Good.  

"I'm remembering to linger in the holy moments, and be grateful."

--Lovely.

"Oh, I can't forget to mention that The Hummingbird Fund is taking off.  We've hired a Program Coordinator for Outreach and Advocacy." 

--Excellent

"The Hummingbird Fund is clearly my next gig, and I can't tell you how happy that makes me feel."

--Brilliant.

"Hey, thanks for asking."

--You betcha.  Peace... Out.

"Peace..Out"

The pilgrimage continues

A few years ago, our son William led a pilgrimage along the Camino de Santiago in northern Spain.  He had a small flock of pilgrims, or peregrinos as they are known along the Camino.  Exactly two peregrinos: his parents.

William selected the route, made the reservations, provided the pre-reading and maps. He had been well-schooled by his mentor George Greenia at the College of William & Mary. 

On our first night, as we sat together preparing for our first walk the next morning, William suggested that we focus our daily conversations around some of life's biggest questions.  And, he had some suggestions for us to consider. (Like I said, he had been well-schooled.)

And so it went.  Each night along the Camino, at dinner, we would unpack the question for the next day.  As we walked, moving in and out of time together and time alone, we moved in and out of conversations surrounding the day's big question.

One of our conversations lingered across many days.  

Where is a God?  How do we know God?  How do we experience God?

Little did William know at the time, but his peregrinos had both written their undergraduate theses on topics in the Philosophy of Religion.  Peggy: The problem of evil and the nature of suffering.  Jim: The nature of a Deity in African Traditional Religions.

As I remember it, the conversations were wide and deep and satisfying.

I have no doubt that Erin and Hal would have enjoyed this pilgrimage and the exploration of Life's Big Questions, since our dinner conversations with them often move into the same open waters. 

This morning I sat listening for God. I sat with my coffee in hand, and I waited.  Our contemplation garden offers a natural calm for waiting. 

I soon heard the birds calling from every direction.  They had been calling before I set my ear to listen, of course.   Songs.  Stories of the night. Advertising jingles of love.

A sole female cardinal chirped to my right.  In a flash, she swooped into the Beauty Bush directly in front of me.  From 3 feet away, she looked me straight in the eye and chirped several more times. Cocking her head ever so slightly, she chirped at me.

This bird knows me.  She knows I sit in this garden most mornings, and she knows I will fill her feeder, which at this moment stands empty.  She greets me and she surprises me, and she reminds me to take care of her.  If I listen, she beckons my response.

The pilgrimage continues.

Peace of Wild Things

Robb Elementary School, Uvalde, Texas, May 24th, 2022...

When there are no more words to approximate the utter gut-wrenching anguish of a desperately grieving parent, whose child has been slaughtered, at school, during reading group, or a spelling test...

When the complexity of a common reality like owning and using a gun to commit mass murder on a regular Tuesday morning in May...When this complexity overwhelms the simple truth that, yet again, an angry teenager with a loaded gun is never going to end well...

When fellow citizens, who are themselves parents, grandparents, teachers, and siblings, continue to disagree vehemently on the moral response to a vast human tragedy such as this..

How do we find hope?  Without hope, how do we march on?

I have little space in my heart for hope this morning. My chest is tight with rage and sorrow.  

This morning, like most mornings, Delta Mae joins me in contemplation.  She sprawls next to me in a patch of sunlight, and waits for me to be done.  Some mornings, like this morning, Delta comes to me for a snuggle.  She senses my mood and needs to connect.  I am grateful.

Peggy has created many gardens full of perennials that bloom from Spring to Fall.  We call this particular garden, in the center of the side yard, our Contemplation Garden. A small stone patio, a single table and chair, and gentle morning sun have made it a natural spot to sit and be still.

Did you know that nuthatches favor fur for their nests?  I see them swoop in and pluck from Delta's haunches or tail.  Delta used to flinch reflexively when she felt the pluck of her fur, like a horse does when it wants to rid itself of flies in the field.  Nowadays, Delta embraces the stillness and the silence, and the nuthatch are happy with their prize.

The garden surprises me with something nearly every day. I saw diamond chips nestled amongst ferns today. Who knew that leftover raindrops on cobwebs could be so dramatic?

We have a box turtle who lives in the contemplation garden.  Invariably, this plodding reptile makes me feel happy.

Peggy has planted mostly native plants in the garden, like milkweed that will welcome monarch butterflies. I added a ceramic blue bird bath, on sale at Kroger, mostly for color, during a bland, brown period in November.  

This past fall, September thru December, I sat in contemplation and watched the garden slowly wither into winter. I knew I likely had ALS as the weakness in my left hand became more real.  Sitting in contemplation with trees losing their leaves and flowering plants sinking back into the soil, I remember feeling an odd and unexpected solace.  My reality of ALS seemed shared by a greater reality.  My truth was held up in a wider truth.

William McNamara defines contemplation as, "...a long loving look at the real."  This works for me.  The practice of contemplation reliably creates space in my heart, some might say in my soul.  The space makes room for hope.

PeggO & JimBob visit the NIH: Day #1

 The National Institutes of Health in Bethesda, Maryland is the world's largest center for biomedical research.  The NIH is comprised of 27 clinical centers, among them the NINDS, or the National Institute of Neurologic Disorders and Stroke.  The NINDS has an enticing tag line for anyone with ALS:  

"Solving the Mysteries of the Brain to Improve Health."

The mission of the NINDS is even more hopeful and specific:

 "...to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people."

When our neurologist at UVA suggested that a visit to the NIH was an absolute possibility, and that he would make the contacts for us, send all of the records, and include a summary note of referral, we were incredibly grateful. 

JimBob and PeggO were ready to pack their bags for an adventure at the world famous NIH.

I'm sure someone mentioned this along the way, but the truth of the matter got lost in the excitement:  the NIH is purely a research institution.  Every patient is part of a research study.  Our visit to the NIH would be, first and foremost, our contribution to medical science.  Every piece of data would be used to "seek fundamental knowledge", and "reduce the burden" of ALS "for all people."

The first inkling that this was going to be an intense 3 days came with the introductory email which contained a secure link requiring the usual sign on and password.  Once inside this secure, digital location, I found 8 attachments with lengthy details about security, COVID, parking, getting around the campus, our hotel reservations, and finally the agenda.  Our days would begin at 8 am, and end around 4, with 60 minutes for lunch at noon.  They suggested in several of the documents to bring snacks.

We already know that PeggO is all about having snacks for JimBob.  In an effort to increase compliance and efficiency, PeggO has added salty, roasted pistachios to the snack pack.  Genius.

The first small glitch surfaced when we discovered that the NINDS contracts with 2 lovely Bethesda hotels, neither of which is dog friendly.   This was news to  Carol who handles all of the arrangements for patient visits at NINDS.   We suggested the Hyatt Bethesda, 1.4 miles from the NIH main gate, and fully dog friendly.

After a bit of back and forth through the secure portal, Carol agreed to allow us to submit the bill from the Hyatt for reimbursement.  Under no circumstances, however, would the NIH cover the $60 doggy surcharge.

Fair enough.  And we were off.

Day #1

As if ALS is not confusing enough, with all of its twists and turns, jargon and choice of paths to follow, the NIH is also a giant campus with a choice of no less than 5 entrances, 2 of them on Wisconsin Avenue.  

The Hyatt Regency Bethesda is also on Wisconsin, a little over a mile away from the NIH campus.  Our Day #1 schedule starts with a nurse screening, and consent signing at 8 a.m.  Peggo hates to be late so we set out promptly at 7:25 a.m.  Remember the part about PeggO hating to be late; it becomes highly relevant. 

JimBob, liking maps as he does, sits in the passenger seat with a paper map printed from one of the many informative attachments referenced above.  JimBob can store and find electronic files with the best of them, however, the maps are quite small on a phone screen, and as it happens not that big on paper.  Since they are just headed down Wisconsin, the map seems superfluous, but it adds a degree of importance to JimBob's day.

Turning into the first NIH entrance on Wisconsin at 7:37 a.m. seems an early triumph, until the handsome, tall, masked security guard waves us to stop well ahead of his guard house.  This entrance no longer admits visitors.  We will need to proceed up Wisconsin, past the second NIH entrance and turn left on West Cedar for the Main Visitor entrance.  

At 7:46 a.m. we arrive at West Cedar. The tension is palpable as we wait in the left hand turn lane.  After a full cycle of lights, with nary a left turn arrow, we spot the small white sign that says, "No left turn 7:30 to 9 a.m. weekdays". It is now 7:52 a.m.

JimBob knows better than to say anything.  Lefty and Righty sit quietly clasped and sweaty.

As the light turns green, a most unexpected and glorious event transpires.

Peggo grips the steering wheel firmly, and with a steely eye, puts the pedal to the metal like never before.  Our nondescript, 2013 Prius rockets across 4 lanes of on-coming traffic, and sails down the sedate, tree-lined West Cedar Avenue.

Lefty and Righty go wild.  Fists in the air, they dance along with JimBob's conga-line chant, "Go Peggo, Go Peggo, Go Peggo!"  It's 7:53 a.m.

Arriving at the the West Cedar entrance,  PeggO is met with yet another challenge to earnest punctuality:  TSA type security.  Everyone and everything electronic would need to come out of the car.  7:54 a.m.

JimBob is generally cheery, and given his recent brush with Indy 500 excitement, he might be feeling even cheerier, affably greeting everyone and asking about their children and grandchildren. PeggO, shall we say, is more conscious of the time.  7:55 a.m.

On to the parking garage.  More security.  Open the hatch, wipe things down with the horrible wand that always gets us pulled out the TSA line.  This time we prevail and are at the COVID-screening check point by 7:58 a.m.  Snacks and schedules at the ready, we have made it.

Top of the list is my first and only COVID test (tears and coughing for 10 long seconds), then we spend a full 90 minutes reviewing and signing consent forms.  Lots and lots of consent forms, including consent for a spinal tap, genetic testing, and many lab analyses.

Last stop before lunch: the lab.

Taryn, our nurse practitioner, accompanies us to the lab with a small insulated cooler.  She will hand carry the blood samples to their respective research laboratories on ice.

It is worth noting here that JimBob is not fond of getting blood drawn.  It hurts and the phlebotomist often needs more than one attempt.  Blood draws test JimBob's cheerfulness. 

The phlebotomy lab at the NIH is a warren of small rooms set up for taking blood.  JimBob is assigned  the "PEDS ROOM" which provides some comfort.  The Peds Room has smaller needles, and a phlebotomist with more skill at sticking smaller veins.  The Peds Room also has brightly colored balloons painted on the walls.

As the phlebotomist is setting up, JimBob eyes an entire rack of multi-colored vacutainers.  Many of these tubes have colors and speckles you would never see in a typical medical office or hospital lab.

Gazing down at the rack full of tubes, JimBob asks quizzically, "Are those all for me?"

"They certainly are," chirps the phlebotomist without looking up.

JimBob counts 15 tubes.  He counts again.  Still 15.

Truthfully, what did he expect at the World's Largest Center for Medical Research?

After lunch, JimBob and PeggO spend the afternoon with Dr. Justin Kwan, a research neurologist who specializes in ALS.  He is a tall, thin man, stylish and precise. Dr. Kwan looks too young to have accumulated all of his expertise and titles. 

Dr. Kwan (everyone calls him Justin) sits facing us, almost knee to knee, with a legal pad on his lap, and begins to take the history.  He listens carefully.  No detail is too small.  No anecdote is disregarded.  He writes it all down, pausing to think about what he hears. 

Recounting the unfolding story of ALS is a bodily experience, and it is emotionally fatiguing.  Retelling the story illuminates the early hope that thumb weakness is just a bit of arthritis.  The story recounts the early speculation that muscle weakness and atrophy in the left hand are due to a narrowing in the spine that is commonly repaired with surgery.  Telling the story from the beginning reminds JimBob and PeggO of the anxiety they carried silently.  This was always going to be ALS.

JimBob is generally a sunny patient, which poses a conflict when telling the ALS story, which is generally a dark one.  The continual slow decline in function, which results from the on-going death of motor neurons, is more naturally told by JimBob from the sunny side. He acknowledges a SLOW decline, hopefully due to the POSITIVE effects of the 23 pills he takes everyday.  He often turns to PeggO to fill in the gaps or for her perspective.  They are team story-tellers.

Dr. Kwan has elicited a detailed history of ALS from hundreds of patients.  He knows how to pace the interview, creating trust with a true curiosity that never feels out of line. He creates intimacy for JimBob and PeggO to be themselves.  The three of them share an authentic mixture of laughter and silence.  They recount stories of coming up the ranks in training, and of supervising students and residents.  They commiserate about being on call and about the honor and privilege of caring for patients. Dr. Kwan knows how to be the doctor's doctor.

Next up:  the familiar neurological exam to document abnormalities in strength, coordination, and dexterity.  Dr. Kwan saves Lefty until last.  With a rare tenderness, he champions Lefty's efforts, and comments soley on Lefty's successes. Dr. Kwan's exam is thorough and dignified.

At the end of 2 1/2 hours together, Dr. Kwan summarizes his findings and invites questions.  PeggO has a detailed list of questions in her bound diary.  She goes first.  PeggO is pleased to have the time with an expert on ALS.  The conversation soon morphs into a mini-journal club, referencing and critiquing scientific studies. Dr. Kwan receives questions with genuine interest.  He is engaged in the opportunity to share the finer details of research.  JimBob especially appreciates the way Dr. Kwan can describe the limits of knowledge. As always, PeggO writes it all down.

As the mood naturally settles into closure, Dr. Kwan slides his chair even closer to share an image on his iPhone.  He has applied JimBob's data to a nomogram created from thousands of ALS patients.  JimBob's rate of decline is in fact slow, and ranks among the top 85% of slowest progression.  Neither JimBob nor PeggO are typically content with 85%, but in this moment they are elated.  Could this be true? JimBob asks for more detail about the data.  Dr. Kwan confirms the accuracy without interpreting what it might mean for JimBob and PeggO.  What it means for JimBob and PeggO is more hope for more time in each other's arms, literally.

4 p.m.

The exit from the NIH clinical center is as circuitous as the entrance, and requires driving 2 floors deeper into the garage to locate the sole exit.  The exit is no where near the previous entry, so another masked security guard offers a complicated set of directions which land us, no joke, at the Wisconsin Avenue guard station where we had earlier that morning been turned away.  This time the guards wave us through and Day #1 is in the books.

The Launch

"I hope you know how loved you are!"  "You are so loved."  "People love you."

Over and over and over again I have received these sincere exclamations that are meant to remind me of the bountiful love that surrounds me.  I am most often without adequate words in response.  

Usually, I begin by looking down at my feet.

Then, I say something like, "the feeling is mutual."  Or, I talk about the relationship that has fostered the love.  While all of this is certainly true, the words do not match the magnitude of the experience, no matter how earnestly I try to make them sound.

Love en masse can be overwhelming. . .

. . . which is no excuse for minimizing the response.

Overwhelming love calls forth gratitude beyond words. 

For this crowd, overwhelming love definitely means showing up. 

Abundant love is meant to be thoroughly enjoyed.  Don't you agree?

Enjoyed with great good humor. . .

...and wordless, heartfelt embraces.

This kind of love is meant to be shared.

The Hummingbird Fund is now a dream come true.  My family and I have a new labor of love.

Through the Hummingbird Fund we will be able to dramatically improve the quality of life for families living with ALS.  

(contact us: thehummingbirdfund@gmail.com)

We are grateful beyond words, and we have meaningful work ahead. 

 

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.

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.   

Bystander Kindness: Speaking Up and Speaking Out

During a recent well child check up, I asked a quiet 6 year old about school.  With a gentle prompt from her mom, she talked to me about how she's been trying to learn to speak up for other kids.  Intrigued, I offered that this is something grown ups need to practice as well.  Nodding in agreement, she said, "Sometimes kids make bad decisions and are mean."  "Yep," I responded, joining her on the carpet to play. "And then what do you say?"

Without looking up from the kitchen toys in her lap, my sweet six year old patient said, rather matter of factly, "I go up to them and I say, Stop saying that, it's mean." 

Speaking up and Speaking Out can be acts of kindness.

Learning to Speak Up is a necessary part of parenting a child with special needs.   Too often, parents second guess themselves as they advocate for their child's health.  "Am I becoming that parent," they wonder.   You know, the parent that the staff talks about in the break room-- the demanding or pushy ones. 

Parents soon discover that building a relationship with the provider makes advocacy easier.  There is a little dance they learn, a shuffle of sorts, between wholesome friendliness and immobile assertiveness.  When the provider likes to dance and everyone agrees on the music, well, then we've got a good time.  Whether it's liturgical or artistic, or improvisational, the dance flows and people feel connected and in sync.

Unfortunately, the dance is not always so smooth.   Grown up clinicians make bad decisions and say mean things.   Often, their comments and assumptions result from a lack of proximity to the reality of the caregiver's life.

Speaking Out takes courage when you may alienate the very people whom you depend upon to care for your child's well-being.

Bystander kindness is Speaking Out for the vulnerable, voiceless or marginalized.

Bystander kindness can be using our words and actions to create increased proximity between the world of the caregiver and the world of the health care team.   Beginning with a compassionate statement creates an invitation to increase our proximity.

"I imagine it's been hard to get much sleep since Henry has been so fussy.  When was the last time you got a decent nights rest, Mrs. Clark?"

"It is so stressful to watch a child lose weight.  I imagine you must be frantic with all of her retching."

Assuming positive intent and staying curious also open the door to increased proximity and a deeper awareness of the caregiver's reality.

"Tell me a bit more about what you mean by nothing seems to be helping?"

"What is your best guess about what is going on?"

And, sometimes, let's face it,  someone needs to push re-set with an apology.

"I'm really sorry, it seems that we have gotten off on the wrong foot.   Let's try that again.  This time we are going to do our very best to listen carefully to your concerns and questions."

Anyone on the team, or in the room, can Speak Out with bystander kindness.  With a deep breath we can all be back in the dance.

"I go up to them, and I say, Stop saying that, it's mean."  Kindergarteners can be so direct.  I wish it were so easy in our adult daily lives.  I wish it were always as safe.

Bystander kindness can also be compassion after the fact.

The elevator door closes leaving a shocked young medical student in a hijab speechless and near tears.  Confronting the angry man who has just hurled a racial slur, may not be safe.  Comforting the woman takes only time and acknowledging the horror of what happened.

"Oh wow.  Are you OK?  I'm so sorry that you had to hear that.  I hope you never have to hear that ever again."

Parents tell me that people often stare or try not to stare at their children with special needs.  One mom recently told me that "the crowds part at the Farmer's Market," as they move along looking for fresh produce and warm donuts.   Is it the wheelchair, the ventilator, the oddly contorted smile on their child's face?

Bystander kindness at the Farmer's Market on any typical Saturday morning might look like casual conversation about the best booth for beets.






Jerron Hermon, pictured above, is a professional dancer with hemiplegic cerebral palsy
https://www.youtube.com/watch?v=WbA_XYPZAPA