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The Hummingbird Fund website is live, and it is the new home for the Offering Kindness blog.

Check us out.  https://hummingbirdfundva.com/blog/

Turbocharged Living

This weekend I attended the kickoff for the Second Annual Blue Ridge Ride to Defeat ALS at the Pro Re Nata brewery in Crozet.  Riders take off at 7 am on May 13th from the brewery.  Three choices for distance means there will be a perfect route for all comers.  Last year, Peggy and I rode the 25K route out to Chiles Peach Orchard where they gave us free ice cream.  The published fundraising goal is $150K, and, with your help, I anticipate we will exceed that.  The money goes toward supporting ALS clinics and ALS families with unmet needs.

A young, enthusiastic man introduced himself to me at the kickoff, saying he is working with Steve Greer as the new co-chair for the ride.  His name is Justin Rumley.  He is a cyclist, and an architect who builds glass skyscrapers.

Justin lost his dad to ALS, and has been committed to ALS advocacy since his dad was first diagnosed.

Justin tells the story of his father's need for a device to enable the use of his feeding tube while on his own.  As his dad grew weaker he could no longer hold the syringe that connects to the tube, and they could find nothing that was commercially made and affordable.

So, Justin went to work in his garage to fabricate something that would make his dad's life a bit easier.  He called it the "Buckwheat", because that was his dad's nickname.

Now Justin has a small business making Buckwheats for people all over the world.

Justin is a fine example of our new ALS kin.

Since being diagnosed, December 2, 2021, Peggy and I have gotten to know a legion of souls like Justin.  Many say it's the worst best club to be in.  

Our ALS kin have inspired me to create the ALS Turbo-charged Living Scale, or ALS-TLS.  Instead of measuring ALS decline like the ALS-FRS-R, this scale monitors post-traumatic growth, in 12 domains.  Although the ALS-TLS originates within the ALS experience, I suspect others may find it intriguing by substituting "difficult life circumstance" for ALS.  And, I firmly believe that ALS caregivers are just as likely as the people living with ALS to demonstrate growth in turbo-charged living.

More on Turbo-charged Living, and its effects on daily function, in a later post.  For now, have a look at the scale.  To score the scale, elect the statement that best matches your current state in each domain, and tally the scores for a current state score.

Traveling with Mr. ALS

I don’t go anywhere these days without Mr. ALS. Not the grocery store. Not the swimming pool or locker room at the YMCA. Not even to the mailbox at the end of our driveway. Mr. ALS is like the awkward kid at summer camp who has yet to learn how to give it a rest. 

Last week, Peggy and I traveled to Southern Arizona at the invitation of dear friends, to spend some time relaxing together, and to experience first hand the complicated issues of border security and immigration reform. More on those two thorny controversies in another post. 

Air travel with Mr. ALS is a whole new adventure. No carry-on luggage. No sprinting for a just-in-time departure. New with this trip is a welcome ride in a wheelchair to the gate and between connecting flights. Oh, and lest we forget, once in flight, there is the long, unsteady walk down the long narrow aisle to the tiny bathroom with a folding door. 

Even without turbulence, every person in every aisle-seat notices Mr. ALS.  I nod and smile, imagining what they might say when Mr. ALS and I are sitting squarely in their lap. 

And then, lucky for us, there is TSA. A supreme adventure unto itself. 

Relinquish your cane. Remove your shoes without falling down. If you’ve decided to wear your AFO (brace for foot drop), it comes off too. Then we get to negotiate the slight incline into the scanner, which I’d never noticed before traveling with Mr. ALS. Once inside the scanner, we must help dear old Lefty raise a hand overhead, which requires a bit of gymnastics. Righty grabs hold of Lefty and hoists both overhead for the 5 seconds it takes to scan my insides. The exit off the incline is the last hurdle before finding a chair to reassemble the footwear. All of it deserving a round of applause. 

In general, TSA agents seem mystified by Mr. ALS. I interpret their universal expression as doubt. I don’t often introduce Mr. ALS, which perhaps is rude of me, but based on their quizzicality, and everything else I need to do, so as not to fall down, I have chosen to let that opportunity pass by. 

Last week, a TSA agent at a busy, metropolitan airport tainted the TSA adventure of with a fetid twist of meanness unseen before, beginning at her scanner. Peggy had already helped me to get un-shoed, with cane, shoes, backpack, and vest on the belt. (There are no chairs on the entry side of the scanner.) The TSA officer barked orders like a grim-faced Victorian school marm: 

•  “Step forward!” I shuffle forward over the lip, into the scanner.

• “Get into the scanner and put your feet in position,” pointing at the yellow footprints spread apart. I adjust my feet, carefully. 

•  “Raise your hands over your head.” 

The agent’s bark must have rattled Righty, because there was no time for the usual gymnastics to help Lefty, who, upon command, barely made it shoulder high. 

This is when the barking turned into shouting which felt like screaming. 

“He can’t raise his arm,” she shouted, over and over, “He can’t raise his arm,” signaling to the other agents that assistance was needed. 

Then, shouting at me, she continued her tirade:  “Get out of the scanner.” “Move.” “Get back out of the scanner!” 

Even as I shuffled out of her scanner, she continued to yell at me, now adding a humiliating shushing-wave of her hand. “Step aside. Stand to the side.” I quietly obeyed. 

As the others behind me marched forward, I felt their sympathy. Notably, no one said a word. 

I stood to the side with Peggy who steadied me until a tall, cheerful agent took charge. He spoke calmly, and quietly. He offered me his hand as I returned to the scanner. He smiled, and gently peppered his instructions with phrases like, “ You’re good, boss.” “Take your time boss.” “ Here, have a seat boss.” What a difference. 

While Mr Smiles was assisting me, Ms. Barking Agent resumed her station at the scanner. Peggy was next in line! 

I looked back in time to see Peggy lean into Ms. Agent’s face with a stern comment or two. While Peggy’s voice was low and forceful, Ms. Agent shrieked something incomprehensible. 

“What did she say,” I asked as we re-united along the conveyor belt. 

“I told her the shouting was uncalled for, that you had ALS, and that a little kindness would be helpful.” 

“And she said…” I asked. 

She said, “I don’t feel like being kind today!’” 

This outlandish statement, and the behavior that preceded it, are examples of anti-kindness. They are unkind actions that prevent or inhibit kindness. 

Once we recovered from the effects of anti-kindness, and recounted the practical kindness of Mr. Smiles, Peggy and I wondered what might have motivated the anti-kindness in Ms. Agent. 

• Maybe Ms. Agent eschews kindness, because she equates kindness with being sweet, and she perceives her job as being tart. 

• Maybe Ms. Agent has never experienced kindness, and therefore has no reference for how to be kind.

• Maybe Ms. Agent is scared of making a mistake or being thought of as weak. 

• Maybe Ms. Agent has learned to yell at people to get things done her way. 

By the time we had reached our dear friends, and moved through the anger, humiliation, and disbelief, Peggy and I began to feel sad for Ms. Agent. Just like a shallow, scowling school marm, Ms. Agent’s anti-kindness envisaged a miserable life. 

Poor Ms. Agent. Nevertheless, the next time I encounter anti-kindness at TSA, I’ll use this TSA FORM. And, the next time kindness descends into anti-kindness, I’ll be using this TSA FORM. 

I have heard the horror stories of others who travel with disabilities. 

• Lost and broken wheelchairs. 
• Refused boarding because you must present yourself in a wheelchair long before able bodied passengers, if you hope to have your wheelchair on the flight. 
• No wheelchair waiting at the connecting gate, as promised
• Fellow passengers maligning someone who moves slowly or has slurred speech.
• Think about it. How does anyone with a wobbly gait or the inability to walk get to a toilet on an airplane? 
• And, why do trains and subways, city buses, and even the trams between airport terminals have wheelchair and handicapped seating, while the entire airline industry has gotten away with not offering these accommodations?  

Frankly, I don’t think it should be necessary for those of us traveling with a disability, like Mr. ALS, to announce and explain our unfortunate circumstance to merit a bit of practical kindness that affords us inclusion and participation in the ordinary inconvenience of present day travel.

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."