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 Double Life of ALS

In a recent essay published in the New York Times, Mary Pipher reveals her double life.  

Perhaps you remember Mary Pipher, PhD., as the best-selling author of Reviving Ophelia: Saving the Selves of Adolescent Girls, and Women Rowing North. Or, maybe you remember her as a provocative guest on NPRs Fresh Air with Terry Gross.  

Her latest work, A Life in Light: Meditations on Impermanence, is currently on my Kindle.

In her recent NYT piece, Pipher states boldly, "Of course, I am leading a double life.  Underneath my ordinary good life, I am in despair for the world."  She goes on, "Some days, the news is such that I need all of my inner strength to avoid exhaustion, anxiety, and depression... In times like these, we need world-class coping skills just to stay fully awake, enjoy our lives and be of service to others."

Pipher shares insights from three sources:

Her grandmother:

                   "...be the person you want to live with every day of your life."                           (Forgive yourself, be whole and grow throughout your life--jpo) 

Psychology:

 

"the best way to cope with suffering is to face it... find ways to balance [...] despair with joy" (Find balance and wisdom in a double-life--jpo)

Thich Nhat Hanh:

"His deepest teaching concerned our interconnection with all life.  We all share the same consciousness..."  (Individual action in response to despair for the world adds to the shared consciousness for positive change--jpo)

Pipher is not alone in the double life.  I imagine most of us can relate to the need for inner strength as we attempt to face a suffering world, one that includes the turmoil in our own lives.  Like Pipher, we most often keep the double-life to ourselves, and share the sunny side with others.

Recently, I spent an entire day lobbying congress to: (1) increase funding for ALS research, (2) create new policy to hasten distribution of safe and effective ALS medications, and (3) address the inequities in ALS care.

Our team of ALS advocates met (virtually) with legislative aides (LAs) in 8 offices:  2 senate, and 6 members of congress.  We told our stories of living with ALS, and urged the LAs to take up our cause. We also listened to each other's stories, eight times over.  Having faced this challenge before, I came prepared with a 2 minute speech to remind the LAs that ALS is like no other adult condition in its rapid decline to profound disability.  I called on the LAs to remember this fact when they heard the ALS community calling for innovative and urgent legislative action.  

As the new team members shared their experiences of managing a life of disability and loss, I could feel the emotional toll crescendo.  For some, this was the first time they had publicly revealed their double-life.  We waited solemnly, holding the silence, when they got choked up.  We "echoed points" that others had made, as a way to show support.  And, occasionally an LA acknowledged their courage.   

In the late afternoon, I kept imagining how a post-game gathering at a D.C. bar would be a welcome end to an arduous day. No such luck.  At 4:30, we waved at our screens and clicked off:  zoom world at its finest.  

I lingered in front of my computer screen, trying to take in the day.  The stories and the emotion had infused me with the interconnectedness of a shared double-life.  I wrote short emails to each person on the team.  I thanked them for their fortitude, and their honesty.  I offered to talk.  It seemed a meager attempt at an email hug.  

As is typical for me, the emotional weight came the next day.  An ill-defined, slate-gray heaviness loomed large. I could not describe it, and I could not shake it.  A dear friend named it for me, saying I had a colossal emotional hangover.  

I muddled along, weary and somewhat confused.  Contemplation helped.  Time outside with Peggy and Delta brought color into the day.  Looking back, a simple meal and a good night's sleep seemed essential to the cure.  I felt restored in the morning.

Slowly, I am learning that our interconnected double lives need time for a re-set after these really rough days, even when they are not full of ALS legislative advocacy on zoom.  I need time to regain my balance to be buoyed back from the deep.  Mainly, I need joy, wonder, beauty, laughter, and affection to balance the darkness and to remind me that we are interconnected through our positive emotions and stories as well.  

In the future, I'll plan for the time to recover.    More time with Peggy and Delta Mae.  More time in contemplation, and doing ordinary tasks like weeding the garden, or making a pot of soup. Time to simply wallow in the love that surrounds me.