“From our perspective, no matter what diagnosis you come with or what’s wrong with you, there is more right with you than wrong with you—no matter what is ‘wrong with you.’”
It was like someone just smacked me on the head and I fell awake. More right with me than wrong with me? The man speaking knows I have Huntington’s disease. In fact, he has spent his whole career working with people who have chronic and terminal diagnoses. At his own Stress Reduction Clinic, he has helped thousands of people who are facing profound suffering.
He kept saying it throughout our conversation: “If you are not dead yet—people, as long as you are breathing, from our perspective (big smile) there is more right with you than is wrong with you, no matter what is wrong with you.”
Living on long-term disability with a chronic and terminal condition, I have a huge list of specialists I can call on to help with what is wrong with me: neurologist for brain problems, psychiatrist for problems in the psyche, speech and language pathologist for speaking problems, dietitian for food problems. The medical literature on my condition divides it into stages based on the inability to do things. More negative, problem-based thinking! I need to be careful to not see myself as one huge, fragmented problem. Although the experts call themselves health professionals, it seems to me that they are forced to act as disease or problem specialists.
But Jon Kabat-Zinn was pointing toward a different, more freeing way.
Feed What Is Working Rather than What Is Not
Jon founded Mindfulness Based Stress Reduction (MBSR), an eight-week program that is used in hundreds of hospitals around the world. His books have sold millions of copies because he is onto something. During our conversation, he explained to me the purpose of MBSR.
“We are going to let the rest of medical and health care system take care of what is ‘wrong with you’ and instead pour energy into what is right with you, in the form of affectionate and kind attention—and we’ll see what happens. What happens is, people are tremendously energized by that invitation.”
Jon is clear that there is a role for western medicine but he is also aware that the health care system sometimes contributes to unhealth and that those with profoundly difficult, long-term conditions often fall between the cracks.
Jon’s work is to dare people to live better lives, even if no cure is possible. While he draws on Buddhist approaches, he is not a Buddhist. Mindfulness, he told me, is a way to live life: “The more you cultivate this present-moment, non-reactive, non-judgmental, open-hearted presence—or attention or awareness—the more it can become your default mode.”
When I am told there is no cure for my condition, it is easy to focus on “Why not?” or “Poor me” or “I don’t want to die.” That reaction adds suffering to suffering. I sought out Jon because I knew he could teach me about living well to the end. He told me, “We all have a terminal condition, called living. The question is, are you still living?”
There Is a Way to Hold Your Suffering and Be at Home in Your Body
“The basic message is a very hopeful one. There is a way to hold all of your story—the full catastrophe—that is not only integrating and joyful, in a certain way, but that also gives your life back to you in ways that are very hopeful and optimistic.”
Jon knows his task is to liberate people. In working with people with chronic and terminal conditions, he first focuses on freeing them from their own stories and from the stories they’ve absorbed from others, which suck the life right out of them. His approach is rooted in wisdom gleaned from witnessing thousands of people who have been in this spot and who have figured out how to get their lives back. This is hopeful. It is the hope of knowing that what you need is right here; it’s not the hope of escaping from this place. I like this hope.
During our conversation, he challenged me: “Yes, maybe you have deficits or losses and they may get worse in the future, but how you are in relation to them in this moment can make an enormous difference in coping with the things that cannot be changed. We know enough about science to realize that your thoughts, emotions, and the stories you tell yourself about the future—about how inadequate you are, or how hopeless things are, or whatever— affect your very biology. You need to learn to be at home in your body, mind, and heart.”
I commented, “Those people who are at home with themselves cause a lot less suffering to those around them and those trying to help them. The ripples keep on going.”
“Yes, that is right,” he said, getting excited. “This is not just a nice little stress reduction for myself to lead a happier, healthier life. When you do this kind of interior work, the social effects are profound: not just in your family (although they benefit) and not just in your workplace, but throughout the world, because of the ways in which the entire universe is interconnected.”
Reclaiming the Present Moment
For Jon, the key to living in a healing way is to reclaim the present moment. Listen to some of his insights:
While you are still breathing, no matter how long you have to live–and that is an unknown—can you reclaim the present moment? That is tremendously healing, even in profoundly difficult situations.
We are all finite being. We are all going to die. But the real question is, before we die, can we live fully? The dying usually takes care of itself. It is the living that is the real challenge.
Am I living the life I am supposed to be living or am I living a caricature of that life? Am I so distracted and caught up in getting someplace else that I am missing the preciousness and the uniqueness of moments on the way to wherever it is I think I need to go to be happy?
As one with a chronic condition, I need to be careful not to get caught in the past—in yearning for the life I had. I also need to be careful not to get caught up in the future—mourning the life I will not have. Both the past and the future can be toxic for us. When we let go of trying to get someplace else, we fully live each moment. Once we start being nourished by the present, our craving for the life we cannot have diminishes.
Losing Your Senses Without Losing Who You Really Are
“Even if you pour energy into what is right with you and you are compassionate with yourself, you will still lose yourself over time,” Jon said. “As we age, we are all losing our senses, biologically. But we are not losing who we really are.”
I know these are not flippant words. Jon’s father had dementia for ten years. “In terms of the progression of cognitive deficits, or losing our senses—hearing, touch, taste, or whatever, or balanced walking—those losses can be folded into the meditation practice, “he said. “Instead of the greatest scourge, they can become the greatest teacher of all.”
This is one of the great gifts of mindfulness. You can use the very thing you fear as a tool to replace fear with love. I know he was offering me powerful medicine.
From the time I was 16 years old, I have meditated looking at my steady hands, knowing that someday they might not be steady because of Huntington’s. Each time, I meditated until I was OK with this possibility. Meditating on my hands has freed me from the expectation that my life should not include having Huntington’s disease. It has taught me not to get caught up in hoping for a future that may be impossible for me. It has taught me to hold my career lightly and to not over-identify with it, as it could easily end. There is a mountain of suffering that I have not had to tunnel through because I lucked into a meditation practice in my teens.
Jon was trying to save me from suffering over things that do not require suffering. This was an act of love.
Mindfulness as a Radical Act of Love
As our discussion neared its end, Jon looked at me and tried to offer a raft of compassion for the journey ahead. He wanted to make sure I was getting the heart and spirit of his message. “When all is said and done, all that mindfulness is, is a radical act of love,” he said. “To drop in on yourself in the present moment and to string some of these moments together in open-hearted presence. It is a radical act of sanity and reclaiming your humanity in the only moment any of us ever have. And that changes everything”
If, in the end, it comes down to living in love, I think I can do that. Even with holes in my brain, I can love. Even with no cure, I can love. Do I need speech for love? Do I really need to hold my body still to be able to love? There are a lot of things I need to let go of, and I have tried to work on those, but if what’s in the center is love, to me that is a liberating idea that connects me with everyone.
Jon knows choosing to face reality and live in a healing way is not easy. “This is a deep existential choice, which is itself a radical act of love,” he said. “Choosing not to fall into despair when that is a kind of default mode is hard. Some people don’t make this choice. And yet this is something every single person is capable of doing. It is not like you need to go to college or be a university professor, or anything like that. Any single person is capable of doing the work of waking up, if they have the appropriate support and motivation. It means living our lives as if they really matter, and they do.”
This kind of compassion or mindfulness is not about learning the right ideas or concepts. It is about practicing compassion daily, on a lifelong basis. Whatever senses we have available to us—hearing, vision, touch, smell, and taste—we can use them to wake up to non-reactive, non-judgmental, open-hearted presence—to love. All of Jon’s books offer very specific ways to awaken the heart of compassion.
I recorded our interview as part of a five-part series, “A More Healing Way: Video Discussions on Disease.” It was also for my book, Dancing with Elephants. This blog post is a sneak peak chapter of my book which will be launched on March 6, 2017.
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