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.