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.”

Dr. Charlotte Dravet with me and young Sarah.

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


Photos from our recent local Indivisible group meeting and Katherine at the local Women’s March.
Posted in Uncategorized | Tagged , , , , | 4 Comments

Finding the Lotus in the Mud

You are the witness of your own heart and mind. You are the infinite witnessing the finite. You are boundless love witnessing anger. You are pure bliss witnessing sorrow.  Love what you are going through.                                                        ~Anam Thubten~

It’s been 8 months since my last blog post and 10 months since I wrote specifically about special needs parenting.  During that time Sarah celebrated her 13th birthday, underwent 2 surgeries, completed the research study she was enrolled in, tried and failed 4 different medications (including the study drug), and had to be treated in the ER for seizures for the first time since 2005.  We’re up to about 70 to 100 seizures per month and I’m exhausted.


Sarah shows off her new gastrostomy tube and her “tubie doll”.

Thich Nhat Hanh coined the phrase “no mud, no lotus”.  The lotus is a beautiful flower that grows out of the muck below the water into the blossom above.  You have to have the yucky mud to grow the beautiful flower. Thay writes:

It is possible of course to get stuck in  the “mud” of life.  It’s easy enough to notice mud all over you at times.  The  hardest thing to practice is not allowing yourself to be overwhelmed by despair.  When you’re overwhelmed by despair, all you can see is suffering everywhere you look.  You feel as if the worst thing is happening to you.

This is a reasonable description of my experience for most of 2016.  You could say we’ve been up to our neck in mud.  He goes on to say:

But we must remember that suffering is a kind of  mud that we need in order to generate joy and happiness.  Without suffering, there’s no happiness.  So we shouldn’t discriminate against the mud.  We have to learn how to embrace and cradle our own suffering and the suffering of the world, with a lot of tenderness.

The question I struggle with is – How do I generate joy in the midst of all this suffering?  How do I find the lotus in all this mud?
tnh-no-mud-no-lotusbook-of-joyIn my quest to answer this question, I have drawn on the wisdom of several great Buddhist teachers and have found two books to be particularly helpful:   No Mud, No Lotus: The Art of Transforming Suffering, by Thich Nhat Hanh and The Book of Joy: Lasting Happiness in a Changing World by the Dalai Lama and Desmond Tutu.   Additionally, I found podcasts of dharma talks given by Anam Thubten and Jack Kornfield to be quite insightful.

The general consensus seems to be that joy and happiness would not be possible without a certain amount of suffering.  Paradoxically, when we learn to embrace our suffering and experience it with grace and an open heart and mind, we actually deepen our capacity for joy, compassion, and empathy.  Below are some of the strategies for working with suffering I gleaned from my studies.

c6abfee3d693765464cd80d3a557d8bc  The first step on the path to reduce suffering is ironically to accept the reality of suffering.  We often hold the misconception that we should never suffer.  Life should always be pleasant and never unpleasant.  The very first teaching given by the Buddha after his awakening was basically, “Suffering Happens”.  This is called the First Noble Truth.  Life isn’t always – or even usually – easy.  We think we’re getting a raw deal, but it’s just the way life is and others very likely have it worse.  For me, this means coming to terms with the reality that Dravet syndrome is generally resistant to treatment and that Sarah is a non-responder, meaning her seizures don’t improve even with the treatments known to help others with her syndrome.

In a sense, it’s about giving up hope.  (Refer to my previous post, Hope and Doubtfor more on that emotional roller-coaster.)  It doesn’t mean I’m going to stop seeking an effective treatment, but rather that I stop fighting with reality.  I stop raging against the universe every time Sarah fails a new treatment.  Desmond Tutu said, “It is how we face all of the things that seem to be negative in our lives that determines the kind of person we become.  If we regard all of this as frustrating, we’re going to come out squeezed and tight and just angry and wishing to smash everything.”  The Archbishop’s sentiment mirrors Thich Nhat Hanh’s teaching: “Being able to enjoy happiness doesn’t require that we have zero suffering.  In fact, the art of happiness is also the art of suffering well.  When we learn to acknowledge, embrace, and understand our suffering, we suffer much less.”  The Book of Joy introduces the concept of eudemonic happiness: Happiness that encompasses “self understanding, meaning, growth, and acceptance including life’s inevitable suffering, sadness, and grief.”

You find the light, not outside of the darkness, but in the heart of the darkness.                                                           ~Anam Thubten~

c6abfee3d693765464cd80d3a557d8bc  Find meaning in your suffering, but don’t be so loyal to it.  Desmond Tutu says, “Suffering can either embitter us or ennoble us and the difference lies in whether we are able to find meaning in our suffering.”  This is a hard one for me.  What meaning could there possibly be in what Sarah goes through?  The pain and anguish experienced by a chronically ill child does not lead to sweeping social change like the fight to end apartheid did.   How is my chronic sleep deprivation serving a greater purpose?

At times when I find myself caught up in self-pity, I recall the wise words of my Texas dharma teacher, Anita Gribbin, who said, “Don’t waller in the wallerin’!”  Jack Kornfield says, “You have been loyal to your suffering, but enough already!  It’s time to let go.  Don’t live your life as a grim duty.”

Is it possible to actually benefit from suffering rather than just wallow in it?  Thich Nhat Hanh wrote, “Understanding our own hurt allows us to see and understand the suffering of others.  Looking without judgement, we can understand, and compassion is born.  Transformation is possible.”  An early expression of this comes from an eighth century Buddhist monk named Shantideva who said, “Suffering gives rise to compassion for all others who are suffering.  Due to our experience of suffering, we avoid actions that will bring suffering to others.”   Centuries later, we have this from Jack Kornfield:

You have suffered.  Everybody has.  Use it well.  Instead of being loyal to it,  go through it and let it empower you to care for  yourself and others in a deeper and more powerful way.  It’s true purpose is to open the great heart of compassion in you.

My direct personal experience confirms this truth.  Having a special needs child has, without doubt, made me a better doctor.  I have a deeper understanding of the struggles faced by my patients and their families and can respond to their needs with greater compassion.  This doesn’t directly lessen the stress of a long night of seizures, but there is the recognition that others may benefit from my experiences.

c6abfee3d693765464cd80d3a557d8bc  Developing more compassion directly relates to the third strategy for reducing suffering endorsed in every source I studied – deepening your connection to others.  This theme was repeated often in The Book of Joy, which quite succinctly states that “the path to joy is connection and the path to suffering is separation”.  Both the Dalai Lama and Desmond Tutu agree that seeing yourself as part of the greater whole is crucial to experiencing joy.  Archbishop Tutu says, “You show your humanity by how you see yourself, not as apart from others, but from your connection to others”.  The Dalai Lama concurred, saying “…human beings are social animals.  One individual, no matter how powerful, how clever, cannot survive without other human beings.”  Douglas Abrams, the co-author of The Book of Joy writes, “It is a virtuous cycle.  The more we turn toward others, the more joy we experience, and the more joy we experience, the more we can bring joy to others.”

Sangha is the Pali word for the community of monks.  The Buddha talks about importance of Sangha in the Upaddha Sutta:

Venerable Ananda went to the Blessed One and, on arrival, having bowed down to the Blessed One, sat to one side.  As he was sitting there, Ven. Ananda said to the Blessed One, “This is half of the holy life, lord: admirable friendship, admirable companionship, admirable camaraderie.”  To which the Buddha replied, “Don’t say that, Ananda. Don’t say that. Admirable friendship, admirable companionship, admirable camaraderie is actually the whole of the holy life.

Many parents talk about how isolating it can be have a special needs child.  It is challenging to find qualified child care, find the time or energy to participate in social events, and to find common ground with people who can’t relate to your experience.  Even a simple trip to the grocery store can be alienating when people don’t understand why your child looks or acts the way they do.  However, the greatest source of strength and support I have found is from the relationships I have formed with others, whether they are fellow Dravet parents, co-workers, or other meditators.  Even brief encounters with strangers can bring moments of joy such as when I recently joked around with my waitress at a local restaurant. One last quote from Jack Kornfield:

Place your hand on your broken heart, or your stomach, or your forehead, or wherever you feel the hollowness of your loss. Touch your measure of pain with compassion while simultaneously remembering your dignity and wholeness. Make a vow to be true to your wholeness and let go of everything that makes you feel you are small. Feel that you are—at the deepest level—your own Zen master, and that you see and understand all, and that you can hold it all in your vast, open heart.
True love and faith arrive when it’s most dark. In the dark there is a special kind of beauty. In a dark time, your eyes can see your true friends by the light of their lamps.


Finding even a small measure of joy when you are suffering can seem an insurmountable challenge.  You have to search for the lotus in the midst of all the mud. Initially, you may find only a small unopened bud.  It is only with tender attention, compassion, and love that the bud can be coaxed to bloom.

To find the lotus, go to the mud.
Jump in the mud.
Swim in the mud.
You will find that you were the lotus all along.                                                                                                ~Anam Thubten


The following Dharma Talks were referenced in this post:
“Inner Dharma”   by Anam Thubten.  If you only ever listen to one dharma talk in your life, it should be this one.
“TheBoddhisattva & Power of Intention”  by Jack Kornfield.
Posted in Uncategorized | Tagged , , , , , | 6 Comments

For Katherine: The Dharma in a Pop Song

This post is dedicated to my first born.  Katherine is brilliant and creative – a budding actress with many talents including writing and photography (she took the photo for my banner above).  She is the artist to my scientist.  Her flare for the dramatic sometimes clashes with my love of peace and calm and she has absolutely no interest in Buddhism.  Fortunately, we do share some similar tastes in music.  Occasionally, when I am in a philosophical mood, I will point out themes from Buddhism hidden in the lyrics of various songs (cue eye rolling from Katherine).  As a fun exercise, she suggested I write a blog post based the song “Car Radio” by Twenty-One Pilots.  So, here goes.

I have these thoughts so often I ought
To replace that slot with what I once bought
‘Cause somebody stole my car radio
And now I just sit in silence

This is a song that practitioners of Vipassana meditation can really relate to.  The musician is stuck driving a car with no radio and has no way to escape his own thoughts.  The difference, of course, is that we meditators do this to ourselves on purpose.

Tedious thoughts

From The New Yorker

Many people mistakenly believe that the goal of meditation is to get rid of thoughts.  They’re quite surprised by how busy their mind is the first time they try to meditate and may think they’re incapable of meditation because they are not able to calm their thoughts for more than a few seconds.  There are many types of meditation practice.  Some use chanting mantras or other techniques to focus the mind.  In Vipassana, or Insight Meditation, the practitioner places the attention on the breath. When a thought arises, the instruction is to simply notice it without getting caught up in it and then return the attention to the breath.  Over the course of a meditation session, you will notice many different thoughts and emotions come and go.  This is natural.  Tara Brach says, “Our mind secretes thoughts like our body secretes enzymes.”

Sometimes quiet is violent
I find it hard to hide it
My pride is no longer inside
It’s on my sleeve
My skin will scream
Reminding me of
Who I killed inside my dream
I hate this car that I’m driving
There’s no hiding for me
I’m forced to deal with what I feel
There is no distraction to mask what is real

The artist’s thoughts are disturbing and he yearns for a way to escape them.  We live in a culture of distractions – smart phones and iPads give us access to immediate streaming of any song, movie, or TV show, any time, anywhere.  My Kindle lets me download almost any book I want in seconds.  When we are forced to notice our mind, we are frequently alarmed by what we find.  We have become uncomfortable with silence and will do just about anything to avoid being alone with ourselves.

I ponder of something terrifying
‘Cause this time there’s no sound to hide behind
I find over the course of our human existence
One thing consists of consistence
And it’s that we’re all battling fear
Oh dear, I don’t know if we know why we’re here
Oh my,
Too deep
Please stop thinking
I liked it better when my car had sound

It’s the job of the mind to think in the same way that it’s the job of the lungs to breathe.  We have some control over both processes, but most of the time thinking and breathing happen all by themselves.  Vipassana is the Pali word that means to see clearly.  When we sit quietly and just pay attention to what arises, we begin to see how much of the drama of our lives is self-created.  We begin to see the stories we create.  Henepola Gunaratana says,

“Somewhere in this process you will come face-to-face with the sudden and shocking realization that you are completely crazy. Your mind is a shrieking gibbering madhouse on wheels barreling pell-mell down the hill utterly out of control and hopeless. No problem. You are not crazier than you were yesterday. It has always been this way and you just never noticed. You are also no crazier than everybody else around you. The only real difference is that you have confronted the situation they have not.”

In the song, the artist comes to a different conclusion about the nature of thinking than what is traditionally taught by the Buddha.

There are things we can do
But from the things that work there are only two
And from the two that we choose to do
Peace will win
And fear will lose
There’s faith and there’s sleep
We need to pick one please because
Faith is to be awake
And to be awake is for us to think
And for us to think is to be alive
And I will try with every rhyme
To come across like I am dying
To let you know you need to try to think

In Vipassana meditation, we are not trying to do anything – we are only noticing what is already happening without identifying with it or rejecting it.  When we clearly see the true nature of the mind, we begin to realize that we don’t have to believe our thoughts and that they do not define us.  Rather than trying to control the process, we simply open to it.  We see everything – what my teacher Anita Gribbin likes to call “the good, the bad, and the ugly”.  Don’t push any of it away.  Embrace all of it.  Come to understand that we are, all of us, a great mixture of love, hate, confusion, compassion, anger, and joy.  All of these things arise at one time or another, and then pass away of their own accord if we let them.  In this way, we can stop running from ourselves.  We can learn to accept and love ourselves – just as we are – no matter what our crazy mind comes up with next.

There’s a Monkey in my mind swinging on a trapeze, reaching back to the past or leaning into the future, never standing still.

Sometimes I want to kill that monkey, shoot it square between the eyes so I won’t have to think anymore or feel the pain of worry.

But today I thanked her and she jumped down straight into my lap, trapeze still swinging, as we sat still.

~Kaveri Patel


Twenty One Pilots “Car Radio” on YouTube

Posted in Uncategorized | Tagged , , , | 2 Comments

Hope & Doubt

hope |hōp| – a feeling of expectation and desire for a certain thing to happen: I hope this new medication works a person or thing that may help or save someoneThis new medication is our only hope grounds for believing that something good may happen: The medical evidence gives us some hope that this medication will help.

doubt |dout| – a feeling of uncertainty or lack of conviction:  Some doubts exist regarding the effectiveness of this medication feel uncertain about: I doubt we’ll see an improvement in her seizures; disbelieve (a person or their word): I doubt those doctors know what they’re talking about.

Hope and doubt are two sides of the same coin.  They are not independent of each other, but co-exist.  If one is present, the other is lurking nearby.  The Buddha did not have a lot to say about hope specifically.  Hope implies a desire for things to be other than they are and is therefore related to greed and aversion, two of the Five Hindrances – a group of mental phenomena that act as roadblocks on the path to enlightenment.   One hopes for or clings to achieving some desired circumstance while pushing away the undesired.   On the other hand, there exists an abundance of Buddhist teachings on the subject of doubt, another Hindrance.  In the context of this blog post, I am discussing the emotional experience of doubt; the feelings of insecurity and fear that arise when a desired outcome is uncertain.  If there was no uncertainty about the outcome – no doubt – there would be no need for hope.  You do not need to hope for a foregone conclusion.

An aside about ethics and medical research:  Researchers use the scientific method to test hypotheses based on observations of measurable or quantifiable data.  In order to produce valid, reliable data, it is important to remove potential sources of bias to the greatest extent possible.  To do this, test subjects are randomly divided into two groups: the study group and the control group.  The study group is given the drug being tested and the control group is given an inactive placebo that is indistinguishable from the study drug.  In a double blinded study, neither the participants nor the researchers know which test subjects are in which group.  However, when evaluating treatments for serious or life-threatening conditions, ethical concerns arise about withholding a potentially beneficial treatment from patients in dire need.  There is conflict between the need for reliable, reproducible data and the ethical mandate to “do no harm”.  One way for researchers to have their cake and eat it too, so to speak, is to allow research subjects to try the study drug as part of an open label study following the conclusion of the randomized controlled trial.  The upside is that more patients have access to experimental treatments.  The downside is that the results of an open label study are more likely to be influenced by phenomena like the placebo effect and confirmation bias.

Screen Shot 2015-11-08 at 10.46.27 AM

Click on image to enlarge.

If you read my last post you know that we enrolled Sarah in a clinical research trial last year.  She participated in a three-month randomized controlled trial (RCT) of a promising new drug for children with treatment resistant epilepsy.  Unfortunately, over the 12 week study period, she showed absolutely no improvement in seizure control, and actually had more frequent and difficult to control seizures. (See image.)   There are two possible explanations for this.  The first is that she was randomized to the control group and was taking placebo rather than study drug.  The second is that she was randomized to the study group and the experimental drug did not help or may have actually made her seizures worse.  Naturally, I am inclined to believe it was the former as the latter scenario is just too depressing to consider.  Recently, the RCT concluded and Sarah crossed over to the open label trial.  She is now receiving the actual study drug, not placebo.  So, back to the topic of hope and doubt…

Based on 12 years of experience trying a long list of treatments including over a dozen medications, intravenous immunoglobulin (IVIG), and the ketogenic diet, to say that I have doubt about Sarah’s odds of responding to any new medication would be a gross understatement.  The only treatment that made a significant impact on her seizure control was the ketogenic diet, which she started at the age of two.  At the time, Sarah was experiencing up to 100 brief seizures per day with longer bouts of status epilepticus about every 2 weeks.  Within a week of going into ketosis, the daily seizures virtually disappeared and the prolonged convulsions dropped from 40 minutes to 15 minutes in duration.  In fact, the last time we called 911 for a seizure was in 2005, one week after starting the diet.  No other treatment has made such a remarkable difference.  Over the past few years, new types of seizures have emerged and, although her generalized convulsions (“grand mal” seizures) only last an average of 2 minutes, they now occur much more frequently.  Despite seeing some of the best Dravet specialists in the country, we have been unable to gain control of these new seizures.  So yes, I have my doubts.

On the other hand, the anecdotal reports of the effectiveness of this new treatment for Dravet syndrome are promising.  Some families report seeing an improvement after just one dose.  Others say that their child regained lost developmental skills.  Many have been able to reduce the dosage of or discontinue other epilepsy medications leading to fewer side effects and improved alertness.  It seems that there is substantial reason to hope that this will be the magic elixir for Sarah.  Oh, hope.

Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.
~Emily Dickinson

I have a love-hate relationship with hope.  On the one hand, hope is what keeps me going, energizing my search for an effective seizure treatment.  Without hope for a better outcome for Sarah, there is only the despair of watching her suffer.  Other Dravet patients have experienced improved seizure control and quality of life on this drug, so why not Sarah?

How do we experience hope in the physical sense?  I’m not talking about how one feels when hoping for some inconsequential thing (I hope the grocery store has my favorite flavor of ice-cream).  I’m talking about the clenching of the belly, the ache in the chest, and tightness in the throat that accompanies desperate hope.  The sensations are nearly indistinguishable from fear, which is the progeny of hope and sibling of doubt.  Fear that things will never change.  That nothing will help.  That the seizures will continue unabated.  That there is not and never will be and end to the sleepless nights and exhausted days.

Generally, hope is considered to be a good thing while doubt has negative connotations.  But, doubt can be a useful shield against the emotional ravages of hope.  If I am skeptical about the benefits of a new treatment, I avoid getting caught up in hoping.  Nothing has worked in the past, so why get my hopes up about this treatment?  Doubt is like a vaccine, giving me some immunity against the fevered peaks and troughs associated with hope and the inevitable disappointments that go with a devastating diagnosis.  On the other hand, doubt can easily turn into despondency and apathy.  Why bother?  Nothing will ever help.  Things will only continue to get worse.

How do I find a balance between these two extremes?  The primary instruction in Buddhism for working with strong emotions is to bring compassionate mindful awareness to our experience, whatever it may be.  The practice is to just notice the experience while neither getting caught up in it nor trying to get rid of it.

In the Satipatthana Sutta – the origin of the mindfulness movement currently underway here in the west – the Buddha gives instructions for the development of mindfulness.*

“And how, monks, does he in regard to feelings abide contemplating feelings?

“Here, when feeling a pleasant feeling, he knows ‘I feel a pleasant feeling’; when feeling an unpleasant feeling, he knows ‘I feel an unpleasant feeling’; when feeling a neutral feeling, he knows ‘I feel a neutral feeling’ …

Mindfulness that ‘there is feeling’ is established in him to the extent necessary for bare knowledge and continuous mindfulness. And he abides independent, not clinging to anything in the world.

That is how in regard to feelings he abides contemplating feelings.”

The instruction is to pause and take note of what is there.  Hope and doubt are present in me.  Having done this, the natural tendency for many people is to ask, “Now what?”   We want to know what to do once we’ve noticed our feelings.   We are conditioned to try to solve the problem, get rid of the unpleasantness.  But there is no next step.  Strong emotions are part and parcel of being human.  Like everything else, when conditions are right, a certain emotion will arise.  When conditions change, the emotion will pass away.  We have no control over this.  I have learned that a significant amount of my suffering is a direct result of trying to get rid of unpleasant feelings.  Thich Nhat Hanh gave this teaching on the experience of anger, which we can apply to any strong feeling:

The Buddhist attitude is to take care of anger. We don’t suppress it. We don’t run away from it. We just breathe and hold our anger in our arms with utmost tenderness. Becoming angry at your anger only doubles it and makes you suffer more.

The important thing is to bring out the awareness of your anger to protect and sponsor it. Then the anger is no longer alone, it is with your mindfulness. Anger is like a closed flower in the morning. As the bright sun shines on the flower, the flower will bloom because the sunlight penetrates deep into the flower.

Mindfulness is like that. If you keep breathing and sponsoring your anger, mindfulness particles will infiltrate the anger. When sunshine penetrates a flower, the flower cannot resist. It is bound to open itself and reveal its heart to the sun. If you keep breathing on your anger, shining your compassion and understanding on it, your anger will soon crack and you will be able to look into its depths and see its roots.

Thich Nhat Hanh’s also asks us to treat anger like a crying baby:

Anger is like a howling baby, suffering and crying.
Your anger is your baby. The baby needs his mother
to embrace him. You are the mother.
Embrace your baby.”

Just as a crying baby will calm when held and rocked by its mother, the pain associated with strong emotions is soothed by simply bringing awareness coupled with compassion to our experience.

On my journey as a special needs parent, I have a few choices.  I can build up hope, clinging to a desired outcome and risk being crushed when it doesn’t occur.  Or, I can get lost in doubt and pessimistic thinking, expect the worst based on past experiences and just give up.  The third choice is to find the middle way – be mindful of the experience of hope and doubt but don’t get lost in them.  Understand that, as long as I am on this path, I will be faced with a roller-coaster of emotion.  Each new drug we try has the potential to generate feelings of hope, despair, fear, longing, and disappointment – sometimes all at once.  My practice is to notice, without judgment, when these emotions are present and bring a sense of loving compassion to myself and my experience.  With repetition, the practice will help loosen the grip of strong emotions, allowing me the space to just be with whatever is happening.


*Buddhist teachings differentiate feelings from emotions, but for the purposes of this post, the words are being used interchangeably.

Posted in Uncategorized | Tagged , , , , , , | 5 Comments

A Superstitious Atheist?

Many atheists, myself included, not only lack belief in a God or gods, but also reject the idea of other supernatural phenomena such as ghosts, psychics, or fairies.  We are skeptical that certain rituals such as prayer or laying on of hands can bring about some hoped for outcome by calling on the favor of a higher power.   Atheists generally disbelieve anything that lacks strong, reproducible evidence.  It follows, then, that atheists are not superstitious – that atheism and superstition are mutually exclusive.  They are.  And yet, there does seem to be a part of human nature – some remnant of our primitive ancestors –  that is compelled to engage in rituals, no matter how small, in order to ward off evil.

Confession time.  I knock on wood to keep bad luck away.  I cross my fingers for good luck.  I knock 3 times on the airplane before boarding to prevent a crash.  Being in the medical field, I never ever comment on what a slow day it is.  I’ve even been known to throw spilled salt over my left shoulder.  I’m not really sure what throwing salt is supposed to accomplish, other than a gritty floor, but I do it anyway.  I don’t worry about walking under ladders, broken mirrors, or black cats crossing my path.  That would be silly.

The bulk of my superstitions are related to my daughter Sarah’s seizures.  We have identified a few reliable seizure triggers such as illness and over-heating.  However, for the most part, her seizures tend to occur randomly.  She may go an entire week with only 1 or 2 seizures and then have 4 or 5 in one night for no apparent reason.  In a good week, I avoid talking about or even thinking about how many days have passed since her last seizure because I don’t want to “jinx” it.  If asked directly, I will knock on wood or cross my fingers when saying that she is doing well.  Not to do so is to invite sure disaster.

Tantamount to blaming the weatherman for the weather, I sometimes catch myself blaming Sarah’s service dog, Alfie, for seizures.  Alfie lets us know that Sarah is going to have a bad night by licking her intensely.  He will follow her around the house, refusing to leave her side, and lick her legs nonstop.  I mistakenly believe that if I can interrupt the alerting behavior, the seizures will be prevented.  So, I send him to his mat to lie down.  Fortunately, Alfie is not susceptible to such magical thinking and refuses to stay, returning to his girl’s side after a couple of minutes.


Alfie holding Sarah’s hand after a seizure.

Why do I perform these little rituals?  I don’t really believe that I can prevent a plane crash by knocking on the door frame before boarding, but I knock anyway.  There are several explanations for this.

An obvious source of much superstitious behavior is cultural conditioning.  We are trained from childhood to say or do certain things at certain times.  I say “bless you” when someone sneezes – not to ward off evil spirits, but because the society I live in considers this the appropriate polite response.  In Argentina, instead of knocking on wood, people touch their left breast or testicle to ward off bad luck.  In ancient times, misfortune was blamed on the will of the capricious gods.  People went to great lengths to appease the gods and avoid attracting their attention.  This attitude remains deeply ingrained in our collective cultural consciousness.  Merely speaking something aloud, or naming it, calls the gods’ attention.  I avoid mentioning seizure-free days out loud lest some spiteful deity overhear and send more convulsions.  I regularly post on Facebook when Sarah is having a particularly bad spell, but you will never see my status update proclaiming, “We’ve gone 5 days without a seizure!!”

Many people believe that their rituals work because of the phenomenon known as the placebo effect.  This is well described in medicine and psychology.  If you believe that snake oil will treat your ailment, you may experience an improvement in symptoms despite the fact that there is no actual medicine in the substance you are ingesting.  A commonly used plot for bad sit-coms has the insecure star believing his success comes only from the power of a lucky token, but after unknowingly losing the token, he discovers he could win the game (get the girl, beat the bad guy, etc) without it.

Confirmation bias is another way our brains trick us into believing things that aren’t true.  We are wired to notice and remember things that confirm what we already believe to be true and ignore the instances that run counter to our belief.  Many of my fellow epilepsy parents believe that their children’s seizures are worse during the full moon.  Every time a seizure cluster occurs within a few days of the full moon, their belief is reinforced.  Seizure clusters that occur at other times of the month or months without a full moon-related cluster do not create as strong a memory.  Belief in the power of prayer is much the same.  We were very interested in enrolling Sarah in a research study for a new medication, but were turned away by the center closest to us.  Eventually, we were able to enroll her in the same study at the Mayo Clinic.  On hearing this, one of our more religious friends exclaimed “Prayers answered!”.  I wanted to ask him who the heck prayed that we would have to spend thousands of dollars traveling to and from Minnesota in order to take part in this study.  What about the prayers that we would get into the local study, or the prayers that her seizures would respond to the first dozen drugs we tried and failed?  What about the thousands of devoutly religious people all over the world praying for a cure?  Our ability to enroll in this study does not prove the power of prayer – it’s just another example of confirmation bias: He prayed for it, it happened and now his belief in effects of prayer are reinforced despite the abundance of evidence to the contrary.

This post from Atheist Living gives, what I believe is the most powerful reason that people engage in superstitious rituals:

In today’s more scientific world, superstitions persist for the same basic reason they began: A belief in superstitions gives people an illusion of control in an uncertain world.

I have absolutely no control over Sarah’s epilepsy.  Knocking on wood or crossing my fingers creates the comforting illusion that I can prolong a seizure-free spell.  The research study Sarah is in is a randomized, placebo-controlled trial, meaning that participants are randomly assigned to receive study drug or an indistinguishable placebo.  In the days leading up to our first trip to the Mayo Clinic, I told everyone I was sure she was going to get placebo.  I felt like, if I even suggested the possibility that she would receive the study drug, I would jinx her.  Even though there was a 50/50 chance of receiving either compound, I couldn’t bring myself to even whisper the hope that she would get the real drug, as if my words had some magical power to influence the randomization process.

The bottom line is, I don’t believe in any of these superstitions.  They are either habits developed over a lifetime or behaviors rooted in my sense of powerlessness over the circumstances of my life.  It is highly likely that I will knock on the airplane the next time we board a flight for Minnesota, and if you sneeze, I will say “bless you”.   I will eat black-eyed peas and greens on New Year’s Day next year, not because I believe it will attract luck and money in the coming year, but because I like black-eyed peas and greens.  On the other hand, I will end this blog post by brazenly stating that Sarah is currently enjoying a period of remarkably good seizure control.  It has been almost a week since her last seizure and, assuming she makes it tomorrow, she will have gone to school every day for 2 full weeks – practically a record for her.  If she has a bad night tonight, I will remind myself that she is already overdue for a seizure cluster and will not fall into the trap of believing that my blog post somehow triggered it.


PS:  In case you’re wondering, we’re pretty sure Sarah was randomized to receive placebo in the study.  Murphy’s Law!
Posted in Uncategorized | Tagged , , | 4 Comments

The Highest Expression of Human Evolution

Let’s talk about something a bit more upbeat than special needs parenting for a change!

About two years ago, my younger sister decided to get married.  She and her partner had been together for over a decade and with same-sex marriage becoming legal in more states, they decided it was about time.  My uncle and his longtime partner decided to join in the fun and tie the knot too.  In one of the more surreal moments of my life, my sister called to ask if I would become ordained and perform their wedding ceremony.  Naturally, I said yes and, despite being an atheist and secular Buddhist, I am now also an ordained minister.  I have since met several others of my “order”.  Apparently, having a friend or family member officiate your wedding ceremony is a growing trend.

As happens, the busyness of life delayed the original wedding plans until late June of this year.  Little did we know then what an important weekend it would turn out to be.  On Friday, June 26th, just 24 hours before the vows were to be said, the Supreme Court ruled in favor of legalizing same-sex marriage.  SCOTUS gave my family their blessing.  In the now famous closing paragraph of the majority opinion, Justice Anthony M. Kennedy wrote,

No union is more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice, and family. In forming a marital union, two people become something greater than once they were. As some of the petitioners in these cases demonstrate, marriage embodies a love that may endure even past death. It would misunderstand these men and women to say they disrespect the idea of marriage. Their plea is that they do respect it, respect it so deeply that they seek to find its fulfillment for themselves. Their hope is not to be condemned to live in loneliness, excluded from one of civilization’s oldest institutions. They ask for equal dignity in the eyes of the law. The Constitution grants them that right. The judgment of the Court of Appeals for the Sixth Circuit is reversed.

I had already decided on my opening words for the wedding ceremony prior to the SCOTUS decision.  In hindsight, the thoughts I chose to express gained greater meaning as people across the country filled the streets carrying banners proclaiming “Love Wins!”

We’re here together as family and friends for only one reason – to celebrate love.  Daily, the media is filled with examples of humanity at its worst; religious war, greed, discrimination, and hate crimes.  What we are doing here today – this coming together to support two couples who love each other and choose to be together – this is the highest expression of human evolution.  The capacity to love each other and to rejoice in that love without qualification, without placing limits – this is the best our species can be.


My sincerest wish is that love will continue to win.  I hope that we will continue to break down the barriers to love imposed by greed, hatred, and delusion.  Greed, that hoards the right to love and be loved and denies that right to others.  Hatred, that proclaims that all who choose an alternative path are to be despised.  Delusion, that can not see that we are all one, all the same, all dependent upon each other for life and happiness.

Embrace your capacity to love.  Revel in your humanity.  Rejoice for those around you who are now able to declare their love and commitment to each other and have that commitment recognized with “equal dignity in the eyes of the law”.

love, O pure deep love, be here, be now — be all;
Worlds dissolve into your stainless endless radiance,
Frail living leaves burn with you brighter than cold stars.
Make me your servant, your breath, your core.


Posted in Uncategorized | Tagged , | 3 Comments

Worldly Winds and Second Arrows

“Monks, these eight worldly conditions spin after the world, and the world spins after these eight worldly conditions. Which eight? Gain, loss, status, disgrace, censure, praise, pleasure, & pain. These are the eight worldly conditions that spin after the world, and the world spins after these eight worldly conditions.”                                                                         ~Buddha

The eight worldly winds are pleasure and pain, praise and blame, fame and disrepute, gain and loss. These are pairs of opposites: one we are attracted to, the other repulsed by. The conditions of their blowing are beyond us and can’t be controlled. We get carried away by these winds and can lose our course easily.                                                                               ~Paul Lukasik

Despite the fact that we are all intimately familiar with the ups and downs of life, most of us are still somehow surprised to discover that circumstances change.  Each of the worldly winds described by the Buddha will come to us at one time or another, and yet we have this idea that life should always be pleasant.  We should only have the pleasure, praise, fame, and gain without their opposites.  If things have been going our way for a time, it is a shock when pain or loss appears.  I am no exception.  As a doctor, I had the idea that serious illness was something that only happened to other people.  What a shock when my healthy 6 month old baby started having seizures and was ultimately diagnosed with an incurable genetic disorder.  In his book, Mindfulness: A Practical Guide to Awakening, Joseph Goldstein shares a quote from Arther Ashe regarding the tennis champion’s diagnosis of HIV:

When asked about his illness, he replied, “If I were to say, ‘God, why me?’ about the bad things, then I should have said, ‘God, why me?’ about the good things that happened in my life.”

The second of the Four Noble Truths taught by the Buddha is that suffering (dukkha in the Pali language) has an underlying cause.  Suffering, or dissatisfaction with life, is caused by our craving for things to be other than they are.  As the adage goes, “We want what we don’t have and don’t want what we do have.”  Our idea of how life should be is rarely in alignment with how it actually is.  According to the Buddha, we can only become fully awakened by accepting life just as it is rather than rejecting it and constantly striving for something else.

IMG_0233How can we apply this to parenting a chronically ill child?  My idea of how things should be is that I should have a healthy, thriving child who can play and learn and go on to be a healthy, thriving adult.  This idea does not match up with the reality of never ending seizures, a kitchen counter full of medications, restrictive diets, and frequent trips to the hospital.  My child has an incurable seizure disorder that doesn’t respond very well to antiepileptic medication.  Every time we try a new treatment, I ride a roller coaster of hope that this time it will work, and crushing disappointment as the seizures continue unabated.  I have been through this with over a dozen different combinations of drugs.  Regarding the Eight Worldly Winds, I think that Buddhist scholars should add “Hope and Crushing Disappointment” as a special subcategory under “Gain and Loss” specifically for people battling a catastrophic illness.

So what is someone in my position to make of the Buddha’s teaching?  When applied to life’s minor frustrations, it is easy to see the truth of the teaching.   For example, traffic jams are bound to happen from time to time.  You can let road rage take over causing suffering for yourself and possibly others around you, or you can accept that they are an unavoidable part of life and stay calm and peaceful in your car.  But, is it really possible to develop a sense of equanimity in the face of your own child’s suffering?  As a pediatrician, I would never tell a parent to just sit back and accept their baby’s illness.  How am I supposed to do this as a parent?  (Damn it, Spock!  I’m a doctor, not a machine!)  I’m certainly not going to sit under a tree and meditate while my daughter has a seizure.  How do I reconcile the teachings with my experience?  Accepting life just as it is sounds more like giving up and I don’t think that’s what the Buddha had in mind.

Although I am far from a place of acceptance, I have been working with a couple of practices to help me cope with the strong emotions that tend to come up when yet another treatment fails or Sarah has a bad night of seizures.

The first strategy is contemplation of the metaphor of the second arrow.  In the story of the second arrow, the Buddha asks his monks to consider how painful it is to be shot with an arrow.  He then asks them to consider what it would be like to be shot with a second arrow in the same spot.  The first arrow represents painful events that naturally occur in the course of our lives.  The second arrow is what we ourselves add:  “In the same way, when touched with a feeling of pain, a person sorrows, grieves, and laments, beats his breast, becomes distraught. So he feels two pains, physical and mental.”  It is bad enough when something painful happens, but when we rage against it, become anguished, lost in self-pity, or lash out at ourselves or others, we are multiplying our suffering; we are shooting the second arrow.  I did not choose this path for myself or my daughter, but if I live in a constant state of anger and resentment, I will be unable to appreciate the moments of joy when they do come.

This is not to suggest that you should ignore your pain.  You should experience your sorrow, frustration, or anger.  Pay attention to the physical manifestation of anguish in your body.  Where do you feel it?  What is it like?  Don’t wallow in it, but also don’t try to push it away or wall it off.  Painful emotions have a way of resurfacing when we least expect them.  Thich Nhat Hanh recommends that we treat our suffering with compassion, like a mother rocking and soothing a crying infant.  Offer compassion to your pain and treat yourself with kindfulness.

“You know quite well, deep within you, that there is only a single magic, a single power, a single salvation…and that is called loving. Well, then, love your suffering. Do not resist it, do not flee from it. It is your aversion that hurts, nothing else.”                                                               ~Hermann Hesse

I would also submit that we should treat happy emotions the same way.  All eight winds will blow in their turn.  There may be pain, but there will also be pleasure.  Seek out those small bits of  joy when they come along and nurture them like a baby bird you found.  Or, those YouTube videos of rescued baby bats wrapped in tiny blankets and sucking on sponges soaked with milk.

The second technique I’m cultivating is to work with the lesser worldly winds that stir up strife on a daily basis, rather than tackle the big hurricane of refractory epilepsy.  I will never give up on seeking an effective treatment for Sarah’s seizures.  However, the truth of the matter is that a cure is not likely to be found in Sarah’s lifetime, and even if we could stop the seizures completely, it is unlikely that the damage done to Sarah’s brain and cognitive development would be reversed.  Ultimately, I will have to come to terms with this but, in the same way that a body builder starts with lighter weights and works their way up to being world champion, I must start by working with smaller challenges.  Can I practice equanimity with the long line in the grocery store, the flat tire, or the obnoxious sales clerk?  Every time I find myself upset by some relatively minor obstacle, my practice is to just notice how I am feeling.  If a solution to the problem is possible, I take the appropriate action.  If not, I try to remember that life doesn’t always go my way and it’s okay.  With frequent practice, hopefully, one day I’ll be able to make peace with my powerlessness in the face of Dravet syndrome.

A fellow meditator had this to say, “I have been dealing with a special needs child for many years (my son is 21, and is diagnosed with autism, major depression and mental illness, and has food allergies and diabetes) and have turned to Vipassana meditation to cope with the unrelenting stress.  I have also had to become unattached to the outcomes of my son’s life; as much as I have tried, I cannot heal him and I cannot control his path. By practicing meditation and mindfulness I am able to be a more present and loving parent for him, and accepting of who he is.”

This is my practice – frequent small bouts of mindfulness and equanimity combined with trying not to shoot the second arrow or build up the suffering that is already present.  Slowly, I am finding that I am less reactive to minor vexations.  It is a work in progress.  Some days the Worldly Winds blow more strongly than others and I find myself resisting life rather than trying to accept things as they are.  But that’s okay.  I’m getting there.

“O snail
Climb Mount Fuji
But slowly, slowly!”
~Kobayashi Issa



Posted in Uncategorized | Tagged , , , , , , , | Comments Off on Worldly Winds and Second Arrows


IMG_0563I was fortunate enough to get away recently for a 3 day silent meditation retreat at the Margaret Austin Center near Houston, Texas.  A few words about meditation retreats for my non-meditating friends:  In the Vipassana tradition, practitioners come together and follow a schedule of alternating periods of sitting and walking meditation interspersed with meals.  Sitting meditation is done in the Zendo (meditation hall) with one’s attention focused on the breath.  Walking meditation is done on the groundsIMG_0567 and one focuses on the sensation of moving and placing the feet.  The retreat is led by a teacher who guides the meditations and gives a Dharma talk in the evening.  Most Vipassana retreats are spent in silence with the exception of the occasional question and answer session and a personal interview with the teacher.

Our teacher for this retreat was Howard Cohn. (See bottom of page for links to Mr. Cohn’s talks.)  The theme of the retreat was Loving the House that Ego Built and Mr. Cohn presented some thought-provoking messages.  Below is my interpretation and application of his teachings.

What is the house that ego built?

From the moment we are born, we start to build an identity, a sense of “I am”.  I am a girl.  I am smart.  Throughout our life, we add to and modify this sense of identity.  We add layers of cultural and economic identity, religious, vocational, and political identity.  A large part of our self view is based on the body – height, weight, hair, skin color, concepts of beauty.  The circumstances of our life also shape our self view.  I am a special needs parent.

Our self-identity seems very real.  We come to define ourselves by certain traits which we believe to be unchanging, concrete.  Often, this comes with a feeling of inadequacy, a sense that I am not okay or I am flawed.  We get the idea that, if we were different, then we could be truly happy.  If I were skinnier…    If I were bolder…    If I were less quick to anger…

The truth is that we are much more complex than we realize.  As an interesting exercise, Mr. Cohn asked the question, “When did you begin?”  When you reached adulthood?  Your adult self was shaped by your childhood.  At birth?  This supposes that we are only defined by our life circumstances.  What about genetics?  You are a combination of your parents.  And their parents.  And their parents.  Think about everything that had to happen in order for you to be born.  Circumstances had to be just right for two people to meet and come together to make a baby.  If any one thing had been different – if your grandfather had died in World War II, if the stock market hadn’t crashed in 1929, if a particular African tribesman hadn’t been captured and sold into slavery, if the potato famine had never occurred in Ireland – you would never have been born.  You are the result of a million things happening just the way they did, when they did.  Everything about you – the family you come from, your race, culture, religious upbringing, propensity towards obesity, IQ, cancer risk, and food preferences – is predicated on everything that came before.

The real question is, How could you be any different than you are?  You are an expression of life living itself.  You are exactly the way the universe wants you to be at this moment.  And, the most astonishing part?  There’s nothing wrong with you.  Say that to yourself a few times.  There is nothing wrong with me.

I learned a new word while on retreat.  Mr. Cohn used the word kindfulness several times.  Kindfulness is a marriage of kindness and mindfulness and represents a new way to approach yourself and your daily life.

Take a moment to reflect on the last few days.  Think about the choices you made, the way you reacted to stressful situations at work or home.  Did you do or say anything that you now regret?  Do you blame yourself for not making a better choice?  Now, think of the same event, but do so with kindfulness.  Recall all of the circumstances leading up to that moment.  What was your state of mind?  Were you harried or tired?  Under pressure?  Overly excited or distracted?  Be kind to yourself.  Forgive yourself.  Your action at that moment was based upon everything that led up to it.  I don’t mean to say that we are not responsible for our actions.  It’s just that the motivation behind our choices is more complex than we usually imagine.

This teaching is applicable to everyone, but I naturally seek to apply it to the special circumstance of raising a child with a complex medical condition.  It so often happens that I am faced with making difficult choices based on sparse medical literature.  Sarah’s condition is rare and very little research specifically directed to Dravet syndrome has been done.  For example, we’re debating the merits of having a vagus nerve stimulator, which is a bit like a pacemaker for the brain, implanted.  This can be very effective for some people with epilepsy, but there aren’t any studies published on how well it helps children like Sarah.  Other families I know have had mixed experiences, from significant reductions in seizure activity to no change at all.  A few said that their child had either an increase in seizures or surgical complications.  How do I decide?  Is the trauma of a surgical procedure worth the 50/50 chance that her seizures will improve?

My usual tendency is to beat myself up mentally about these types of decisions.  What if it turns out to be one more treatment that doesn’t help?  What if she’s one of the few who experiences complications?  What if there’s a complication from the anesthesia and she dies?  It’s my fault.  I made the choice.  On the other hand, what if it helps?  She could have had this years ago, preventing hundreds of seizures, but I waited and prolonged her suffering.  Again, my fault.

Mr. Cohn prompts me to bring kindfulness to the situation.  I can slow down and breathe; pay attention to how I am feeling in my body and bring kind attention to where the stress is manifesting.  In reality, all I can do is gather whatever facts may be available, consult the experts, and talk with others who have been in a similar situation before making the best choice I can at this moment.  Being caught up in self-blaming and anxiety only makes the decision harder by obscuring the truth of the situation.  In the future, I may wish that I had chosen differently.  But, I will remember that I did the best I could with the information I had.

“It’s of no use to look back and say, “I should have been different.” At any given moment, we are the way we are, and we see what we’re able to see. For that reason, guilt is always inappropriate.”
Charlotte Joko Beck ~ Nothing Special

A million things happened just the way they did to get you to this moment. Cultivating an attitude of kindfulness makes it more likely that you will make the best choice. But if you end up looking back with regret, kindfulness facilitates the process of self-forgiveness. You already love yourself, even if you don’t always realize it. That’s why life is so painful at times.


Love After Love

The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other’s welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

~ Derek Walcott


Links for Howard Cohn:

Also, watch David Whyte on Rilke and Walcott.

Posted in Uncategorized | Tagged , , , , , | 3 Comments

March 26: Purple Day for Epilepsy Awareness

This gallery contains 4 photos.

Today’s blog is dedicated to Purple Day, a day to wear purple and raise awareness about epilepsy.     Purple Day was started by a young girl from Nova Scotia, Cassidy Megan, in 2008.  Within only a few years, Cassidy’s … Continue reading

More Galleries | 2 Comments

You yourself, as much as anybody…

You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection.                                       -Buddha

As the caregiver of a special needs child, one of the most frustrating pieces of advice that I hear on a regular basis is, “You’ve got to take time for yourself.”  “Don’t forget to take care of yourself, too.”  “Take time to pamper yourself.  You deserve it.”

It’s not that I don’t agree.  I totally agree.  But, when I hear this I generally just want to yell, “When?”.  How in the heck am I supposed to find time for myself with all the other stuff I have to manage?  What should I sacrifice?  Work?  Neurologist appointments?  Trips to the pharmacy to refill medications?  IEP meetings at the school?  Orthodontist visits for my teen? Grocery store?  Sleep?  Perhaps you noticed the rather long gap between this blog post and my last one.

I could probably let go of some of the housework, but we do actually need clean clothes to wear and did I  mention that I have an undergraduate degree in microbiology?  Shall I describe the potential diseases caused by the gunk growing on those dirty dishes piled up in the sink?  Contrary to what my teenaged daughter would tell you, I’m not really a neat freak.  You could write the Great American Novel in the dust accumulated on my furniture.  However, I do insist on at least a minimum of sanitation in our home.

So, the question remains – When?  And, if I did find some free time, what would I do?  The truth is, I can’t set aside a lot of time and money for a gym membership or day at the spa.  Fancy manicures aren’t really compatible with my line of work.  I’m not much of a materialist, so shopping doesn’t appeal to me.  A week hiking in the mountains sounds lovely, but is pretty much out of the question.  I need something relaxing and cheap with a flexible schedule.

For a while I had a membership for a monthly discount massage.  It was pretty relaxing to get a regular massage, but the nearest clinic was over 30 minutes away.  With commuting, that was 2 hours out of my only day off and I just couldn’t keep it up.  I try to go to a yoga class once a week, but often don’t make it for the same reasons I had to give up the massages.

The only thing I have found that is relaxing and also fits my chaotic schedule is meditation.  It’s free and can be done in whatever amount of time you have, whether it’s 5 minutes or an hour.  It can also be done pretty much anywhere.  Your neighbors might think you’re a bit weird if  you sit with your eyes closed in the lotus position in public, but you can find a park bench, put on your sunglasses and pop in your ear buds and no one’s the wiser.  At home, I will occasionally bribe my teen to play with Sarah for 30 minutes while I meditate in the bedroom wearing my noise-canceling headphones.  Most days, I do set my alarm clock 30 minutes ahead and meditate while everyone else is asleep.  I also program the coffee-pot the night before because, as far as I’m concerned, meditation before coffee is called sleeping.

My teacher, Randy Gribbin, has a wonderful perspective on meditation.  He says,  “During this time there is nowhere you have to go, nothing you have to do, and no one special you have to be.”  In the act of sitting mindfully, you experience life just as it is in that moment without adding anything to it.   You can let go of planning, worrying, remembering and just listen to the birds sing, the wind blow, or the distant sound of traffic.   For me, it’s a time to give my poor over-worked adrenal glands a break from constantly secreting stress hormones.  It’s a time out for grown-ups.

Although the practice is to follow the breath and let go of thinking, I do sometimes find that, during my time on the cushion, solutions to worrying problems may present themselves.  After meditating, I am calmer and less reactive to minor stressors.  When I’ve been meditating regularly, I find myself better able to catch those times when I’m letting my thoughts run wild, building up what would otherwise be small issues.  So, as my gift to myself, I spend 30 minutes meditating every morning.

As a gift to you, I offer a 15 minute river meditation.  I took this video when on retreat at the Vallecitos Mountain Ranch in New Mexico.  It was my way of bringing home a small souvenir of the great peace that can be found in nature.  I occasionally put in my ear buds, close my eyes, and listen to this during my lunch break at work, reminding myself that, even though I am at the office in the middle of a hectic work day, somewhere in the mountains, this stream continues its merry journey.

I also invite you to listen to the guided meditations recorded by my teacher, IMS trained Community Dharma Leader, Randy  Gribbin.


Posted in Uncategorized | Tagged , , , , | 2 Comments