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 someone: This 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.

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.

Metta

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

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