Advent angels

The liturgical season of Advent has long been my favorite time of the church year.  As a child I enjoyed the urgency and drama of Mary and Joseph needing a place to have their baby, and ending up in a stable.  Of course, I didn't meet my first lamb or cow until I was 22, living on a 16th century farm in Cornwall, England. So, my bucolic, childhood visions of a manger did not include mud or manure.  I saw my first baby born at a teaching hospital in the Bronx, and there were no mammals other than those in scrubs with masks and gloves.   I did deliver a footling breech baby in a thatched hut in rural Guatemala, which actually exceeded the drama and urgency of anything I might have imagined as a youngster during the 1950s and 60s in the steel town of Lorain, Ohio.  All of this aside, it has always been the mystery, the awe, and wonder that has captivated my imagination during Advent.

Angels may be my favorite part of Advent. The Christmas story  always includes angels that mysteriously appear in the night, gently conveying God's eternal message:  "Fear not."  

I'd like to experience an angel someday... a real, true angel.  I wonder... What will it be like?  

• A warm Light in a deep darkness? 
• A heralding of exquisite music that draws me into a pure and ecstatic haze of Bliss? 
• A palpable Presence of Love that floods my being with awe? 

"Fear Not.  I am with you."

Advent is also known as the season of expectant waiting, which is wholly (holy) ironic, because I am no good at waiting.  My cane now grants me priority boarding, and I am all too happy to prance forth ahead of the crowd to take my seat in steerage.

If I dare to probe deeper, the expectant waiting of Advent offers an annual opportunity to remember the hope of a transformative love, born into a world that relegates unwed, teenage mothers, like Mary, to the sidelines of every society.   

In my view, newborn babies are inherently holy beings.  This changes, of course, when they refuse to sleep, and when they cry with no apparent rationale.

A fresh, healthy, pink, full-term newborn who is ready to nurse and be comforted in a parent's arms is a pediatrician's dream come true, and one of the most sacred moments to witness, no matter the venue.  

Virgin Mary and Child by the painter Andrea Solario. 

Our Lady of Milk and Good Birth.circa 1500

This Advent I am savoring the season of hope.  I am turning my attention toward palpable love, and glorious music.  I am seeking out opportunities to see light brought into the darkness, or a deep darkness brought out into the light.  I am expecting hope to surprise and delight me. I'm on the lookout for angels.

"Fear not.  I am with you always."

• us-sues-arizona-shipping-containers-mexico-border
• Dr. Rick Bedlack discusses clinical trial on ALS reversal
• St Paul's Memorial Church Christmas Eve services

 

Adapting

Have you ever stumbled on a wooded path in autumn?  The brightly colored leaves begin to obscure the well-worn trail, and the abundant acorns act like mini-rollers underfoot, making conditions ripe for an awkward misstep.

I went down today; tumbled right off the path.  The fall came as a complete surprise.  I was using my new, high-tech walking stick.  I was walking slowly with Delta leading the way along a path we have traversed almost daily for more than 20 years. My left foot caught the edge of a small twig poking up from the leaves, and I stumbled without the reflexes to autocorrect.

I fell in slow motion.  As I rolled downhill into the underbrush, I actually had plenty of time to hear Peggy gasp behind me.  

Ordinarily we can chuckle about these gaffs.  Today, it scared us, because the fall came out of the blue.  The good news is that I landed fine, even though I launched off the trail in an uncontrolled free-fall.  

Once Peggy got me righted, our hike continued without further surprises, but the mood had changed.  The sunset seemed more solemn.

Life with ALS brings constant change.  Like parenthood in its earliest stages, ALS presents new challenges almost daily.  Just when you have almost mastered the last skill or adaptation, there is a new one at your threshold.

This past month has brought a whirlwind of adaptation to the Plews-Ogan household.

I no longer carry anything that requires the strength of two arms. (The lamb stew careening across the kitchen floor ended that, much to Delta's delight.) I need to rest between activities that require effort, like watering the garden.  I routinely use a walking stick outside, and I pace myself throughout the day.  It's best if I type in bursts of 20-30 minutes.  And, we have started major home renovations to create a handicapped accessible bathroom and bedroom on the first floor.

Gratefully, the Hummingbird Fund also presents new challenges and opportunities:  

• We will soon award our first grant to expand access for modular ramps to families facing this necessary transition for wheelchair access.  
• We are entering exciting partnerships with local, regional, and national ALS organizations to advance research and advocacy.  
• This blog, Offering Kindness, and the Fund's social media accounts have brought many newly diagnosed folks and their families to us for advice and council on integrating ALS into their lives.

As Peggy and I endeavor to integrate ALS into our own lives, we continue to be buoyed and inspired by the love of family, friends, and the ALS community.

I'll leave you with this choral work by René Clausen performed recently by our church choir.  The choir at St. Paul's Memorial Episcopal Church continues to be at the center of our community of love.

Set Me As A Seal

(by René Clausen, from Song of Solomon}

Set me as a seal upon your heart

As a seal upon your arm

For love is strong as death.

Many waters cannot quench love

Neither can the floods drown it.

Set me as a seal upon your heart

As a seal upon your arm

For love is strong as death.

Listen to St. Paul's Memorial Church Choir

(minutes 25-28)

 

 

 

Dancing trees

I look forward to my daily morning contemplation.  A cup of coffee in a favorite mug.  DeltaMae at my feet.  And a sweet bit of time to embody stillness, silence, solitude, and an open heart I call space.  

Each morning's experience is unique.  Many mornings bring gifts of insight or peace, or wholeness.  Other mornings offer an unadorned groundedness to begin the day.  Today I was reminded that every reality manifests an opportunity.

Stillness is my current challenge to harmony in contemplation.  The fasciculations of Mr. ALS impose themselves--insinuate themselves-- rather rudely into the experience of stillness.  

I am faced squarely with the opportunity to welcome pesky muscle twitching into the morning's contemplation.  Thank you Mr. ALS for the gauche interruption of bliss.

Alas, here is another stark reminder that the realities of our daily lives are meant to be lived too.  Gauche or not.

I don't enjoy the constant fasciculations that herald the death of motor neurons.  Maybe one day I will miss them, but not today, not now.  

Slowly, ever so slowly, I am adapting to their gauche presence.  Accepting them with poise remains a significant on-going challenge.  

Alas, another stark reminder:  seeing God in everything and everyone means seeing God in the gauche.  Ultimately, it even means welcoming God in the gauche.

Gratefully, this morning I looked up to see the sun spotlighting the tree tops which had just begun to sway, in a breeze that was theirs alone-- a gift of their morning contemplation, and a welcome reminder that God exists to be enjoyed.

Sacred questions

Recently I took part in a Tim Lowry ALS panel for occupational therapy (OT) students.  As panelists we answered many of the questions you might anticipate about how OT has improved our lives with ALS.  I was happy to tell the students about pencil grips, rocker knives, and splints.  The OT professor specialized in hand therapy and was eager to help with my current conundrum:  buttering toast. 

The question that most surprised me was directed to Tim Lowry who communicates via eye-gaze technologies.

"How do you prevent giving up when there is limited treatment and no cure for ALS?"

Fair enough. We tell the audience that we are an open book. Ask us anything. Still, it's not a question in the same league as how to butter toast.

Youthful students, given permission to be truly curious, will expose the elephant in the room.

"How do you face existential challenges, for real, in the day-to-day?"

Tim's poised response revealed the intentionality of a reflective life.  He has learned to nurture his mental and spiritual well-being to support the consequences of his on-going physical decline.

ALS poses its unique challenges to be sure.  Our motor neurons are dying, and it turns out that we really need healthy motor neurons to get dressed in the morning.

One option, I suppose, would have been to answer the youthful questions with a question: "How do you face the existential?  How do you keep from giving up?"  Life is chock-a-block full of existential opportunity:  our present climate crisis, raging gun deaths, a loved-one's eating disorder, a recurrent major depression, a father with ALS. How do any of us live with uncertainty and ambiguity in our lives?

I wonder, now that I have ALS, am I meant to understand more about managing existential crises?   I mean, I have stuff to do.  I have a garden to weed and water.  I have a Tim Lowry panel to prepare for.  I have asparagus to blanch for lunch with Zach and Isabelle.

Here's one thought.  What if we allowed our present reality to become sacred?  Fighting for climate justice and gun safety.  Being with a friend who is struggling.  Learning to put your socks on with one hand.  Blanching asparagus.  Living with ALS.  What if we approached all of it with reverence for the moment at hand?  

Fr. Gregory Boyle, S.J., the founder of Homeboy Industries, and author of The Whole Language, puts it this way:

"We remember the sacred by our reverence...This is the esteem we extend to the reality revealed to us. Jesus didn't abandon his reality, he lived it. He ran away from nothing and sought some wise path through everything. He engaged in it all with acceptance. He had an eye out always for cherishing reality. A homie, Leo, wrote me: 'I'm going to trust God's constancy of love to hover over my crazy ass. I'm fervent in my efforts to cultivate holy desires.' This is how we find this other kind of stride and joyful engagement in our cherished reality. The holy rests in every single thing. Yes, it hovers, over our crazy asses."

Holy tears

 

Tender

soothing rain

all night last night

lingers unto morning

like sweet tears

to begin this day anew

and whole.

I did not grow up in a culture of sweet tears, the kind that flow gently down the cheek, as plainly and innocently as a smirk might linger while contemplating someone's clever retort.  In truth, I learned to withhold smirks and tears at all cost, until I became a dad.

Dad tears are sweet tears. Dad tears are Holy Tears.

I rarely withhold tears anymore.

Last week I found myself in Howard Goodkin's office with Peggy and William.  Howard is the chair of neurology at the University of Virginia. He is also a child neurologist with whom I have shared many complicated patients. Howard invited us to join him and the leaders of the ALS Dart Center of Excellence to explore the possibility of a partnership with the Hummingbird Fund.

It is worth mentioning here that Howard is also the person I emailed when Peggy and I first seriously suspected a diagnosis of ALS.  We were lost, adrift, so I emailed Howard. He called my cell before I could get up from the computer.

A couple of months later, at the Hummingbird launch, Howard joined a dozen colleagues, friends and family as a docent, mingling with guests, wearing his docent's badge that read, "ASK ME ANYTHING."  He was terrific.

All of this history sat silently in the back of my mind as I calmly entered Howard's office and took a seat at the familiar, long oak table, much like I had done many times before while working at UVA.

We began with introductions and roles, going around the table, ending with me.

As I began to recount my diagnosis, and the journey which has led to the Hummingbird Fund, tears began to roll down my cheeks.  I was surprised by the tears, and I smiled at Howard who was sitting at the other end of the table.  I said, "Well Howard, this is the first time I've cried in your office."

Everyone chuckled quietly, and without missing a beat, Howard said, "Well Jim, it's not the first time someone has cried in this office.  Many people have cried in this office, including me."

More soft chuckling... followed by a brief, intimate silence... followed by me having a moment to regain my grounding as a man with ALS, in a room full of people who know Mr. ALS all too well.  The group moved on through our agenda, and we will have a meaningful partnership.

I am learning that tears and ALS are pretty much kissing cousins.  Fury, deep disappointment, grief, and heartbreak. This community also weeps for the fearlessness, dignity, and brazen honesty of our kin. The road forward is a road through tears.  Holy tears of love and courage.

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."