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.

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"