Monday, September 19, 2022

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.  What if we approached all of it with reverence?



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."





Tuesday, September 6, 2022

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.








Friday, September 2, 2022

ALSPLS

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 warriors 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 ALSPLS.  The ALS Passionate Living Scale, measuring:  
  • passion for change
  • altruism 
  • adaptability
  • kindness
  • compassion
  • fierceness and drive
  • hopefullness
  • resilience
  • humor
  • advocacy for self and others
  • ingenuity
  • vision
What do you think?  Great idea?

Thursday, August 25, 2022

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."



Wednesday, August 3, 2022

My daily 40

A local gastroenterologist taught me the proper way to swallow a pill.  

Said gastroenterologist was also the mom of a teenager in my care.

Teenagers famously swallow their acne medicine without so much as a sip of water.  Hence, the doxycycline sticks to their dry esophagus and creates an ulcer.  Said teenager ends up in the pediatrician's office with chest pain.  Thus, teaching teenagers to swallow their pills with water is just practicing good, preventive medicine.

Here's what I learned from the gastroenterolgist-mom, and subsequently passed along to dozens of teenagers I treated for acne:

  • begin with 8 ounces of water
  • first take 2 swallows of water to moisten the esophagus
  • then swallow each pill with the remaining water   



I take 40 pills a day, my daily 40.  That's roughly 1200 pills a month. 

If I followed my own advice, I'd be swallowing 320 ounces of water a day,  That's 2.5 gallons of water a day.  Peggy has suggested I try milk instead of water, to make the swallowing easier. Doing the caloric calculations for 2.5 gallons of whole milk, that would be an extra 5,760 calories a day.

In various mindfulness workshops, I've been instructed to eat one blueberry or one M&M at a time, savoring the individual experience of the moment.  And perhaps it would aid my healing to contemplate the action of each pill, individually, in the moment, as it fights Mr. ALS, but 2 1/2 gallons of water a day seems impractical, and potentially dangerous.

And besides, I eat blueberries with gusto by the handful.  Is it really a surprise that I'd take my pills by the handful too? 

When swallowing pills, I am careful to drink lots of water.  There are potential hazards involved with this technique. 

Depending on the size, shape, and quantity of pills in each handful, I might cough a bit, causing water to shoot up my nose.  This feels exactly the same as getting water up your nose while jumping off a dock, into the lake, doing a cannonball to show off.  I can't help laughing in either circumstance.  Such a show off.

Included in the daily 40 are 4 anti-retroviral medications (ARVs) that are part of a NIH clinical trial.  Why am I taking ARVs commonly used to treat HIV, you ask? Well, it turns out that I am among the ALS patients who have HERV-K floating around in their blood.  And, HERV-K, like HIV, is a retrovirus.  The NIH study aims to determine if ARVs can eliminate HERV-K from the blood.  And what might be the role of HERV-K in ALS, you ask?  Like most everything with Mr. ALS, the role of HERV-K remains illusive.  Sorry.



Ah, but here's the plot-twisting good news.

During the HIV epidemic, a small group of patients with HIV also developed ALS, or something that looked exactly like ALS.  When these patients received ARV treatment for the HIV, their ALS symptoms went away.  In other words, ARVs  completely cured the ALS.

This current NIH trial lasts 24 weeks.  At the end of the study, the NIH will no longer provide ARVs, even if they seem to be helping clinically, because this is not a randomized clinical trial. The purpose of this trial is only to investigate the effect of ARVs on HERV-K in my blood.

Just for kicks, let's imagine that I do experience a positive clinical effect from the ARVs, like those folks who had HIV.  If I want to keep taking the ARVs, the monthly cost would exceed $12,000, and insurance will not cover ARVs when used off-label for ALS.

To continue taking the ARVs after the NIH study ends, it appears I will need to contract HIV.  Now, no one wishes HIV on anyone, but this seems the only logical way to obtain insurance coverage for medication that might successfully defeat Mr. ALS, right?





Thursday, July 21, 2022

Milkweed


"Contemplation is a long loving look at the real."
                                                                --Fr. William McNamara

Most mornings, weather permitting, I begin my day sitting here in our contemplation garden.  I sit alone, or with Delta Mae, in contemplation, sipping coffee, hoping to center myself in silence, stillness, and solitude.  The intention is to sit here until I'm ready to start the day.  

How do I know when I'm ready? Not surprisingly, ready means different things day to day.  Mostly, I'm ready to stand up to start the day when I feel whole.  For some folks, I suppose whole might mean complete, or put together.  But for me, whole is when I feel more real, at least more real than when I sat down.  You might say I feel a bit less independent, judged, accomplished, or broken.  Truthfully, I feel whole when I feel more like part of the garden.  Steady, poised, rooted.

Often, the garden will offer me a gift in contemplation. 
  
 

Look at these milkweed.  Look at how they stand tall, day after day, boldly growing toward the sun.  Their brilliant flowers have passed.  The spectacular monarchs, drawn to their blossoms, have moved on.  Now, they wait for autumn.  In a month or so, each velvety pod will crack open to release silky seeds across the morning breeze.  And, as the air turns cold, their thick green leaves and sturdy stems will wither, turn a dusty brown, and fall, unceremoniously back to the earth.

This morning I see dignity, I see humility, and I see what's real.






 

Thursday, July 7, 2022

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"