Uncertainty

The Buddhist law of impermanence (Anicca in Pali) has never been more tangibly true for me than it is right now.  Things are changing at home and across the nation.  New year, new seizure types, new medications, new nursing care, new presidential administration, new era of political unrest.  How will 2017 unfold?  No one knows.  One of my teachers, Howie Cohn, asks, “Do we have any idea what will happen next?”  He answers his question by stating that we only have ideas about what will happen next; we imagine that we know how things will go, but it is impossible to truly know.  “Uncertainty is the truth of our existence.”

In the first few years after Sarah was diagnosed with Dravet syndrome, I put a lot of time and effort into learning about the syndrome.  I read the scientific literature, joined the board of a non-profit dedicated to raising awareness about it, met with epilepsy experts and researchers from around the world, including Dr. Dravet herself (wonderful person), and even helped sponsor research into the rare disorder.  In the end, knowing about Dravet syndrome did not give me any more control over it.  A decade later, Sarah has over 100 seizures per month and we’re about out of treatment options.  Sadly, I recently learned that the child of one of my co-board members died of SUDEP (sudden unexplained death in epilepsy).  You truly don’t know what’s coming.

It is human nature to crave certainty.  We want to live in a predictable world.  We want the comfort of believing we know.  With uncertainty comes anxiety and fear.  But, knowing (or rather, thinking we know) actually leads to more suffering.  We become fixated on our idea of the truth and are often shocked when reality doesn’t match what we know.  This was certainly my experience on election day last November.  Thinking I knew who would win the election did not change the outcome.  Thinking I know about Dravet syndrome has not changed Sarah’s path.

Howie Cohn asks, “Can we live with uncertainty without it being a source of dread?”  Sometimes, when faced with an unpredictable future, we become lost in imagining all the possible ways things can go wrong.  Fear of the unknown can stop us from taking any action at all.  I’m reminded of the famous Mark Twain quote:

I’ve lived through some terrible things in my life, some of which actually happened.

Paradoxically, when we cultivate a deep understanding of the truth of uncertainty, we increase our capacity to respond to a given situation with wisdom.   When we pay attention to what’s happening in the present and don’t get stuck in our concept of how we think things ought to be or lost in imagining what plight might befall us, then we can more rationally determine the best course of action.

In Zen Buddhism, practitioners are encouraged to cultivate a “Don’t Know Mind”.  This practice was originally taught by Bodhidharma, the fifth century monk widely regarded as the first Zen master.  In modern times, we have Suzuki Roshi’s famous book, Zen Mind, Beginner’s Mind to help guide us in this practice.  Suzuki Roshi’s opening words are, “In the beginner’s mind there are many possibilities, but in the expert’s there are few.”

If we think we already know, we limit the possibility of learning more.  If I say, “I know how this will go”, I am less open to it going otherwise and suffer more when the outcome deviates from my expectations.  Guiding teacher at the Empty Gate Zen Center, Zen Master Bon Soeng puts it this way:

It all comes down to this (Zen Master hits the floor). Clear it away. Return to zero. What do we see, what do we smell, what do we taste, what do we touch? Everything is truth. What we know blocks the truth. Returning to not knowing opens us up.

Another Buddhist teacher, Gil Fronsdal, warns us about misinterpreting the teaching.  He brings attention to Suzuki Roshi’s statement that, “Not-knowing does not mean you don’t know”.  Gil points out that, “[Don’t Know Mind] doesn’t require us to forget everything we have known or to suspend all interpretations of a situation. Not-knowing means not being limited by what we know, holding what we know lightly so that we are ready for it to be different. Maybe things are this way. But maybe they are not.”  In this way, we can open to many possible outcomes.

When I first started writing this post, shortly before the new year, we were in the midst of making some difficult decisions about Sarah’s care.  The opportunity to enroll in another research trial was presented, but we had to wean her off of a medication that she had taken for years in order to be eligible.  There was no way to know how she would react to withdrawing this drug.  Would her seizures worsen?  Would we go back to the days of calling EMS for unstoppable convulsions?  If we enrolled in the study, would she be randomized to receive the drug or would she end up in the placebo group?  Even if she got into the treatment group, there was no guarantee that the experimental medication would help Sarah.

As I continued to explore ways to write about not knowing, the day of the presidential inauguration came, and with it, more uncertainty.  The early actions by the new administration make it clear that the services Sarah depends on such as access to special education and healthcare are in jeopardy.  The rights and safety of my gay family members are at risk.  My patients from immigrant families are in danger.  I am heartened by the surge of political activism across the country, but continue to have serious doubts about the future.

What we know comes to so little.  What we presume is so much.  What we learn, so laborious.  We can only ask questions and die.  Better save all our pride for the city of the dead and the day of the carrion:  There, when the wind shifts through the hollows of your skull, it will show you all manner of enigmatical things, whispering truths in the void of where your ears used to be.
~Pablo Neruda

Anicca, the universal law of impermanence, is always in effect.  Things will change one way or another and we rarely know the outcome in advance.  The goal is to learn to greet uncertainty with peace rather than dread.  If we are frozen by fear of the unknown, we lose what little power we do have to influence the course of events.  Sarah’s seizures have gradually worsened over the last several years.  If I let fear stop me from making changes, there can be no possibility of improvement.  Katherine, my teen, wanted to go to the local Women’s March in January.  What lesson would I have taught her if I’d kept her home out of fear of possible violence at the protests?

I can live with doubt and uncertainty and not knowing. I think it is much more interesting to live not knowing than to have answers that might be wrong. If we will only allow that, as we progress, we remain unsure, we will leave opportunities for alternatives. We will not become enthusiastic for the fact, the knowledge, the absolute truth of the day, but remain always uncertain … In order to make progress, one must leave the door to the unknown ajar.                      ~Richard Feynman, Physicist

Over the course of January, we gradually weaned Sarah off of the prohibited medication while simultaneously starting a different drug allowed by the study.  As a result, she experienced a reduction in clusters of brief nocturnal seizures, but began having unpredictable daytime convulsions that put her at risk of falls and injury.  We took her out of school while we train a new nurse who will accompany her to school and care for her in the event of a seizure.  In early February, we traveled to Seattle for the initial screening visit for the new study.  The enrollment criteria are strict and Sarah underwent a slew of testing including blood work, electrocardiogram and echocardiogram.  This week I received word that a slight irregularity was found in one of her heart valves.  It doesn’t affect her health in any way, but did disqualify her from participating in the study.

So, here I am, sitting in a coffee shop writing about uncertainty.  At this time, we are out of new options for Sarah.  We can tweak the medications she already takes, but there are currently no new treatments to try.  What does the future hold?  Don’t know. Will resistance efforts alter the direction our country is currently headed?  Don’t know.  I will continue to work with the doctors to try to provide the best quality of life possible for Sarah.  I will continue to call my local legislators and participate in the local Indivisible group.  I will continue to cultivate mindfulness of the truth of this moment, which in the end is all we can ever truly know.

I wanted a perfect ending.  Now I’ve learned the hard way that some poems don’t rhyme and some stories don’t have a clear beginning, middle, and end.  Life is about not knowing.  Having to change.  Taking the moment and making the best of it without knowing what’s going to happen next.  Delicious ambiguity.                              ~Gilda Radner

Metta

Photos from our recent local Indivisible group meeting and Katherine at the local Women’s March.

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