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.
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?
In 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.
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 Doubt, for 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~
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.
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