The Sutra that Vimalakirti Speaks is about a householder friend of the Buddha who is both deeply awakened and very ill. The sutra mentions that Vimalakirti is only pretending to be sick, using skillful means in order to teach others. Judging from the reactions of those who gather around him, it’s an unsettling method, as he embodies an apparent contradiction—enlightened, sick—they are reluctant to confront.

The Buddhist concept of skillful means is a tricky one; it’s possible to make big, consequential mistakes when you believe you know how to bend your message, circumstances, or other people in the service of (your idea of) helpfulness. And realizing that you’re on the other end of someone else’s attempt at skillful means can sometimes just feel icky. The skillful means interpretation in Vimalakirti’s case feels a bit pious to me, or like the sutra-makers are trying to distance themselves from something they too find unsettling in Vimalakirti’s message. Anyway, there are some less orthodox and perhaps more fruitful ways of looking at this “pretending.”

That Vimalakirti might be pretending to be sick is reminiscent of something the Chan teacher Huangbo says: “Teaching Chan is like casting fake pearls before people pretending to be beggars.” Huangbo knows that he’s offering his “pearls of wisdom” to people already in possession of the greatest jewel, the awakening inherent in each of us. In other words, whatever our circumstances, even if we’re in need or ill, that doesn’t make us essentially beggars or sick people; it makes us beings in a world that includes poverty, disease, and many other sorrows. It’s a call to see, in addition to wounds and scars, the small glow of awakening in each of our bellies.

The invitation is to open some space between the natural condition of being alive in a world of birth and death, and an unchanging identification with some aspect of that condition. The nature of being alive in such a world is to be a little tilted, because the world is tilted. That’s different from saying that your identity is most significantly the particular way you’re tilted. I’ve lived with a chronic health condition, and I can remember early on having to decide whether I was going to go through life taking that one fact of life, putting it at the center, and hitching everything else up to its tethering post. What would it be like to keep company with it instead, remembering that I was also keeping company with so much else?

Vimalakirti’s suggestion is that you let your vow of awakening, for yourself and others, settle at the center. Over time the vow spreads out into a kind of field, and everything from the fleeting moments to the longstanding circumstances of your life will arise in that field, and the vow will help hold them. This field tends to have fewer fortifications linked by deep grooves of habit, more spacious views, and a milder climate on most days.

Hanging out in such a field can bring ease, and ease can bring openness. The bodhisattva of compassion is called Guanyin in Chinese, which means “Listens.” This vow we’re talking about is her vow, and so it calls us to listen with a simple heart to our kin of all kinds when they speak, roar, cry, and whisper about the sorrows of a tilted world. Held together by scars and radiance, all of us. Often in need, all of us, and sometimes some of us in great need. The filaments that connect us vibrating with prayers and exhortations. The vow at the center, the small glow in our bellies, listening, sending out its own filaments in reply.

It’s starting to go a bit dreamlike and mysterious inside this “pretending.” Yunmen, another Chan teacher, asks a question that takes us further along that path: “See how vast and wide the world is. Why do you get up and get dressed at the sound of the morning bell?” Why, in the midst of the unfathomable vastness, do you wake up every morning when the alarm goes off and start another ordinary day? Why do I come out of the deep space of sleep every morning to put on my human skin and go out to live a human life?

Maybe it’s because each of us is the vastness manifesting in a particular way. You’re this person, I’m that person, there are the bird persons under the eaves and the ground cover persons just beginning to spread in the courtyard. We put on our clothes when the alarm goes off because, for another day, we accept the invitation to be the vastness taking this form, and we’ll try not to be stingy about it. We’ll “pretend” to be human beings in our human being skins, not in the sense of a false performance but remembering that we’re both born and unborn, named and unnamed—everything in the universe at once, taking the form of a particular human being. There’s a sense of play about this: the performance today is heavily flavored by memories of childhood summers at the beach or by comically ramifying lists of tasks, or it is stained and dyed by silence.

In a koan from the Book of Serenity, the Chan teacher Dongshan is dying, and a student asks him, “You’re unwell. Is there someone, after all, who isn’t sick?” In other words, is there an aspect of you unaffected by illness? Is there some eternal buddhanature part of you that isn’t experiencing the sickness you’re experiencing?

Dongshan says, “There is.”

So the student asks, “Does the one who isn’t sick take care of you?” That’s a natural way of thinking about it: If there’s something we believe in, like buddhanature or God or Goddess or whatever we identify as that-which-is-not-sick, do we find consolation and comfort there? Are we being taken care of by the not-sickness of the universe?

But Dongshan says the opposite: “I’m actually taking care of that one.” In other words, the life I have been given is shaped like this right now. Even when it’s hard, it’s an extraordinary gift, the vastness swirling into form to experience itself like this, like me, and in exchange I’m living my life as generously as I can, which is the way I take care of that one. In another koan, someone remarks on how hard his friend is working. The friend replies that he’s doing it for another. When he’s asked why he doesn’t get that other to do it for themselves, the friend replies that it’s because they have no hands: The vastness has no hands but ours.

Dongshan’s student goes on to ask, “What’s it like when you take care of that one?”

Dongshan says, “Then I don’t see that there is something called illness.” I might be sick, but I don’t have preconceived ideas about what illness is. I’m not going to start from the position that illness is a failure of life to go as it should, or that it’s some kind of gift. Let me be sick and find out what it means.

Once when a particularly bad patch of illness stretched on for months, I’d wake in the morning and sometimes, just for a moment, I was in the sweet, calm space before the illness constellated around me, and I could remember what not-sick was like. Then the symptoms would start blinking, and I’d realize that it was going to be another long, challenging day. I’d stumble out of bed, make tea, and weep. Both things were true, the sweetness of a moment of physical ease and the weeping. Denying neither of them, living them both as uncomplicatedly as I was able, was what I could do those days to care for that one, to stay close to the vow.

Unbeguiled by the lure of skillful means, I marvel instead as my hand figures out, moment by moment, what it means to be a hand, and my heart learns what a heart is on a sunny morning after days of fog. Are they, am I, pretending? Not exactly, but sort of, if pretending means a series of assays and approximations, one not-knowing flowing into another, with lots of pauses to listen. Outside my window, are subatomic particles pretending to be trees? The world isn’t only a dream, but it is, in part. How do we take care of a dream?

⧫

This excerpt is a chapter from Vimalakirti and the Awakened Heart: A Commentary on The Sutra that Vimalakirti Speaks (Following Wind Press, 2016). Used with permission. The book may be purchased here.  Support Joan Sutherland, Roshi on Patreon. 

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I’ve built a grass hut where there’s nothing of value.
After eating, I relax and enjoy a nap…
Though the hut is small, it includes the entire world.
In ten square feet, an old man illumines forms and their nature.
—Shitou Xiqian (700–790 CE)

When I first heard Shitou Xiqian’s poem “Song of the Grass Roof Hermitage,” I immediately identified with its message. Although I do not live in an 8th-century hut in China but rather a ground-floor flat in rural England in the third millennium CE, my life is limited to a small space similar to Shitou’s. For him, hermitage is out of choice. My own confinement is less voluntary, as it is the result of long-term illness.

In December 1995, I contracted Epstein-Barr virus (widely known as mono in the US and as glandular fever in the UK) while working as a plant biologist in Switzerland. That went on to become the post-viral condition myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). My symptoms have varied over twenty-seven years of illness, but I am currently confined to my flat and limited in my mobility. 

A few years after developing ME, I attended a weeklong yoga course specifically designed for those with chronic illness. At the course, one of the instructors suggested that we could view our condition as a choiceless retreat. At first, I found that suggestion almost offensive, as I wanted to be out in the world living my life, not stuck inside the same place for months and years. This way of life felt more like a prison than a retreat. However, as time went on, I began to see the wisdom in the instructor’s words. Although I had little choice in how much time I spent inside four walls, I did have control over how I thought about the situation—and how I chose to spend my time in confinement for however long it was to last. Illness may have limited my ability to do many things, but it has provided more time and space for contemplation and spiritual practice in lieu of being able to work. Moreover, the pain and uncertainty that come with long-term illness provide a strong push to find a way out of suffering, or at least to develop ways of living with it on amicable terms.

In hermitage, as in illness, life grows smaller and quieter. Within this quieter space, small things become more noticeable and greater sources of joy. This is just as true of zazen—as the mind stills, we hear the call of birds or notice a leaf spiraling in the wind or the glow of the sun on powder-puff clouds. In our hut, we see how the view from the window changes daily in tune with the weather and seasons. Growing plants and the phases of the moon chart the passage of time, and putting out seeds and nuts for birds and squirrels offers companionship.

By giving ourselves completely to what is here and now, there is a fullness of experience untainted by comparison.

For many people living with illness, being confined to one space for long periods of time may be the norm. For others, it occurs only during bad periods or flare-ups. In recent times, a large percentage of many populations experienced this kind of confinement during COVID lockdowns. For many of us with chronic health conditions, there was very little change; this is life as we know it, and it continues to be so now that most COVID restrictions are over. 

During periods of involuntary confinement, there is little choice but to take on the life of a hermit. We can either embrace this change or fight against it. We may feel very limited in contrast to the expansive life we used to live, but is life measured in terms of how far we travel and how much we do? Can a life be as fully lived in one hundred square feet as it can through regular travel and exploration of new things? I believe so. In fact, the lack of mental novelty can even be conducive to going deeper into life and our own experience. The 13th-century founder of Soto Zen Buddhism, Eihei Dogen (1200–1253), expresses this beautifully in his essay Genjokoan:

A fish swims in the ocean, and no matter how far it swims there is no end to the water. A bird flies in the sky, and no matter how far it flies there is no end to the air. However, the fish and the bird have never left their elements. When their activity is large their field is large. When their need is small their field is small. Thus, each of them totally covers its full range, and each of them totally experiences its realm.

As a former botanist, I would love to have a large and rambling garden to tend and to take long walks through verdant hills and forests, but at present, all I can manage is to tend a dozen or so containers growing medicinal and culinary herbs in front of my flat. Still, the fullness of attention I can give to those dozen pots is without measure, as is the joy it brings.

At a lower level of energy, during one of the times when I was at my sickest, I lived in the guest bedroom at my mother’s house and took strong sedating medication to relieve the pain of muscle spasms. The one thing I could do each day, aside from eating and toileting, was to light some incense and recite a few Buddhist verses. That practice became deeply important for me, even if the vast majority of each twenty-four-hour period was spent supine in bed. 

Were I to compare those experiences to what I would have ideally liked to be doing, a lot of the joy in them would be lost. By giving ourselves completely to what is here and now, there is a fullness of experience untainted by comparison. The fullness does not come from the greatness of the experience but from how completely we give ourselves to it. Totally giving ourselves to life, the self falls away, and there is just action and the experience of it.

In writing this, I don’t want to paint a portrait of life as a chronically ill person that does not recognize the cycles of pain, fatigue, and numerous unpleasant and disturbing symptoms that most patients experience. I do not wish to minimize anyone’s suffering or propose that chronic illness is some kind of golden idyll. It really isn’t. I feel privileged to be able to do the things that I can do, and I know that others may not have the capacity to enjoy even those. However, just because our life is confined to a smaller space does not mean that we cannot live fully. During periods when I have to surrender to illness and take to bed, I also try to do that as fully as I am able, even with all of the fears and imagined scenarios that often accompany those times.

Shitou writes of his grass hut, “Though the hut is small, it includes the entire world.” Our illness, too, includes the entire world. The haiku poet Yamaguchi Sodo (1642–1716) expresses it similarly:

my hut in spring
there is nothing in it
there is everything

For those living with chronic illness, perhaps there is wisdom in exploring what we do have rather than thinking about what we have lost. Instead of craving something else, we find intimacy with what is here and now, letting life come to us on its own terms without making demands. It may not be the life we want, but it is the life we have, and it is full and rich with experience. Our grass roof hut may be a room in a small rural house, a flat in a large city, or even a hospital bed. Regardless, we can live in it as fully as we can, drawing on the wisdom and experience of hermits of centuries past who learned to be content with a simple life in a small space.

Shitou concludes the “Song of the Grass Roof Hermitage” with the lines:

Let go of hundreds of years and relax completely.
Open your hands and walk, innocent.
Thousands of words, myriad interpretations,
are only to free you from obstructions.
If you want to know the undying person in the hut,
don’t separate from this skin bag here and now.

The Buddha way does not lie outside of this skin bag—this human body—and practice and realization are not limited by large or small, old or young, sickness or health. Buddha action arises out of sincerity rather than the magnitude of what we do. While we may have limited choice over our bodily capacity for activity, we are free to choose how wholeheartedly we live, and maybe we can look to the hermits of the past for inspiration in doing so.

⧫

Treeleaf Zendo and the Monastery of Open Doors are digital practice places for those who cannot reach a physical zendo for reasons of health, geography, work hours, or a number of other reasons. Treeleaf and the Monastery of Open Doors provide zazen sittings, retreats, discussion, and interaction with a teacher, as well as a pathway to nonresidential Soto Zen Buddhist priest training. Read more about their priest-training program in the article “The Monastery of Open Doors” from our Winter 2022 issue. 

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I have a disability. 

I say that not for you the reader, but really for myself. You see, I am 54 and a half years old, and really haven’t dealt with the fact that I have cerebral palsy. 

To be fair, I wasn’t diagnosed until I was 38 years old, when I had to have foot surgery. The surgeon was afraid to cut into the foot without knowing what he was dealing with, so he sent me off to a neurologist, who came back with this finding.

It’s not like I didn’t have issues before I was 38. My parents say they took me to twenty-seven different doctors, which resulted in heel cord surgery when I was extremely young, with the idea that I would walk better. Many doctors wanted to do further surgeries, but, gratefully, my parents passed… I was put on medication, which I had a terrible reaction to, to stop leg spasms. I had at least one doctor tell me I’d end up in a wheelchair by the time I was an adult. I believe that’s when I decided to stop seeing doctors. I think I was in my late teens. 

When I first started walking, I had shoes (that I still have) that were altered with a long wooden piece to raise the height. I wore braces for a little while as a child. When I was in elementary school, they wanted to put me in special education classes, though I later was put in gifted classes. I wore lifts in my shoes all the way through high school. Speaking of high school, I was incredibly shy and awkward, and never knew if I was denied dates by girls due to my disability or not. It was an extremely difficult and painful period.

I was told by countless doctors and orthopedic surgeons that I had one leg that was shorter than the other, or that my right hip was higher than the other, which caused me to walk with a pronounced limp. As well, the right side of my body has much less muscle tone than the left, more obvious from the calf muscle as you go up to the bicep. As you can imagine, the diagnosis of cerebral palsy came as quite a shock. 

I knew absolutely nothing about it. As I did research on the internet, I learned that, while I had been treated for a structural condition my entire life, CP was a neurological condition. I also learned that there was little to no information about the condition for adults. It was as if you were completely on your own after you reached adolescence. After getting frustrated by the lack of information, I moved on with my life, not really thinking much about my condition and not dealing with the fact that I have a disability.

A few years later, I was diagnosed with osteopenia, a loss of bone mineral density. I found this extremely strange. One, being a male, and two being an ethical vegan for twelve-plus years. Most studies show that osteopenia and, more specifically, osteoporosis are linked to eating animal products. Doing some research on this condition, I discovered that both conditions were indeed linked to CP.

Again, I moved on with my life without giving much thought to the CP. 

About six years ago, I was having issues with urinating. I visited a urologist, who, upon doing tests, came back with a diagnosis of a neurogenic bladder. He explained that the condition keeps the bladder from fully being able to empty. He also explained that this was the result of cerebral palsy. When I got home and did some research online, I confirmed that this was tied to the CP.

I know that I will have to have both hips replaced due to the wear and tear of walking with a limp. I have arthritis in both hips. But osteopenia? Neurogenic bladder? What else was I in for?

I had known that my walking was going to continue to deteriorate. It had been already over the past few years, to the point where I really should be using a cane. But: vanity. I wouldn’t get a disabled placard for my car for years, and whenever I use it, I get out of my car and question whether people are wondering if I’m “disabled enough” to deserve the placard. And only maybe a year or two ago did I accept a wheelchair ride at the airport to get through what would have been a long and exhausting walk to the gate. 

I found out that UCLA had a program called the UCLA Center for Cerebral Palsy. I found a doctor at UCLA on their website and left her a phone message. She called me back right away and was kind enough to answer my questions. She confirmed that osteoporosis was indeed more common in patients with CP. That signs of aging happen faster than in the population. Organs age more rapidly. Patients have urologic issues. We have more pain and fatigue. 

She told me CP patients have post-impairment syndrome symptoms, which are weakness of muscles, arthritis, increased pain, swallowing disorders—symptoms can be coughing after eating and drinking, food stuck in mouth, or recurring pneumonia. 

Twenty-five percent of people who could walk as children lose mobility as they age. We may have increased pain, difficulty walking, stiffness in muscles, increased risk of falls, dental health problems, or depression. Our heart and lungs have to work harder, and it can be three to five times harder to complete a task. 

In other words, I was fucked. 

This phone conversation did not go over well with me. Rather than feeling like I had a good sense of what was to come, I wanted to pull the sheets over my head and go to sleep forever.

For the next three years or so, I was pretty depressed about this potential future. 

That brings me to the five-day silent Theravada Buddhist meditation retreat that I completed on August 17, 2019. I went into the retreat with no expectations. I had hoped for some insights, of course, but put no pressure on myself. The retreat was in a beautiful setting, Big Bear City, California, amongst thousands of 1,000-year-old sugar pine trees that literally smelled like cupcakes. Vegan cupcakes, of course.

When we received the schedule for the five-day retreat, I saw that there would be eight thirty-minute meditation sits per day for the three full days and multiple walking meditations. Walking! My nemesis! I had decisions to make. The first was, would I sit on a cushion for the sits? Could my back and hips endure that many sits in a day? I had gone on a five-day retreat three months earlier that was put on for those who work in the animal welfare community. At that retreat I exclusively sat in a chair, and did not even attempt the walking meditation periods. Walking is difficult enough for me. It’s extremely laborious, and balancing is not easy these days. In a walking meditation, the idea is to walk very consciously and slowly. You pay attention to each step and keep your attention looking forward. Walking while practicing inner peace? That’s like the old saying about walking and chewing gum. 

I was assigned Cabin A, which was closest to the meditation hall, because of my CP, which I was very appreciative of. The hall was still a bit of a walk down a relatively steep slope. Our cabin was farthest from the dining hall. 

I made the decision that I would try to sit on the cushion for the meditation periods. Worse case, I would switch over to a chair if it became too strenuous. There were three teachers on the retreat and only twenty-three retreatants participating, so it was quite intimate. Right away, I felt insecure about my disability. I felt like I stood out and wondered if people were watching me, wondering what my condition was, or if I was OK. I had a rough time balancing my body each time I would go to sit on the cushion and had an extremely difficult time getting up from the cushion. After each sit I had to do a lot of stretching. (To be fair, after so many long sits, so did everyone else.) 

When I sit, I am unable to place my hips and knees on the mat. One of the teachers approached and helped me by placing cushions under each of my hips and having me hold an additional cushion while meditating. This helped me to keep my back straight, which kept me from straining. The next day she added a meditation chair contraption, which further aided me.

After the first sit on day two, the moment of truth arrived: walking meditation. Would I skip it, or at least give it a go? I made the decision to try it. I was here, and I was going to be present with every experience, whether it was positive, negative, or neutral. 

I found a spot that was free and began to walk. It was a mess. I would lose my balance after a couple of steps, and get really frustrated with myself. But I would just start over again. I would go from moments of shame and anger to feeling proud of myself for trying, while looking around to see if anyone was watching me. It was quite the exercise emotionally and spiritually.

Breakfast, lunch, and dinner all came after sits in the meditation hall. Either the caretaker or the retreat manager would provide golf cart rides up to the dining hall. At first, I was a bit hesitant to take a ride. I don’t know if it was a “pride thing” or something else. 

As the days went by, I gladly accepted the golf cart rides.

I believe it was day three, though it’s hard to recall when you rise at 5 a.m. for a  fifteen-and-a-half-hour day, when I was resting in bed, on my back, and had a moment. It’s not easy to explain, but I had a realization that I have been at war with my body since I have been conscious that I have a body. I have hated my body. Between the cerebral palsy, migraines, depression, osteopenia, neurogenic bladder, arthritic hips, and many more conditions, plus what’s to come, I have had nothing but disgust for my body. I have lived my life in denial of my body and my disability. I’ve wanted nothing to do with my body. It’s as if I have been living outside of my body. 

And in that moment, I came to peace with my body. I decided to end the war. Or it was decided for me. As I said, it was complicated. I decided that I was done. I was finished hating my body. Being at war with my body had caused me so much suffering. I had been hurting myself for so many years. Needlessly. 

I decided right there and then, even if my body rebels, if migraines hit, if I fall while I’m walking, if, or more likely, as additional conditions arise from the CP, it’s OK. This is me. I own this body. I own this disability. It’s part of who I am. I may not be able to control or stop pain from entering my body or my life, but I can at least minimize the suffering that I allow. And I realized that whether or not anyone is looking at my body, judging or curious, ultimately it doesn’t matter. It’s really about how I feel.

The post “I Own This Body. I Own This Disability.” appeared first on Tricycle: The Buddhist Review.

Out of nowhere and interrupting an otherwise beautiful May morning, I just so happened to hit the jackpot of drama, the grand slam of misfortune, a condition I’d soon learn is sometimes spoken of in medical circles as “the worst possible thing.” I was slapped with three uppercase initials—ALS—that signified I was now victim to a rare, quickly debilitating neurological disease. It was the kind of disease which results in total paralysis—including the loss of one’s voice and an assured countdown to respiratory failure—within a few years for nearly all who are diagnosed with it.

Of course, I hadn’t seen any of it coming. The day before the diagnosis, I was so confident in the promising course of my future that increasing life satisfaction felt almost fated. In 2016, I was thirty-five and at a beautiful resting point, relaxing into a well-curated adulthood, seemingly removed from having to reckon with the threat of death. I was growing accustomed to feeling competent and in control.

Call it chance, or destiny, or the cunning cosmos wanting to poke a hole in my existential hubris, but reality had other plans for my precious life. I was being schooled in the ancient lesson that most of us will learn eventually: that certain blessings are safe to take for granted until the day they are suddenly, inexplicably, shockingly not.

The morning carried a warm spring breeze that seemed to herald a general cheeriness from everyone, chattering squirrels included. The route to my appointment with a neurologist had me weaving my bike along the Boulder Creek path around joggers, parents with strollers, and skateboarders. Wildflowers sprouted up along the edges of the pavement in obstinate declaration.

There was, though, one thing tugging at the corners of my attention in an increasingly troubling manner. It began the previous fall, when I noticed myself fumbling while dressing. Bra straps and buttons became progressively more difficult to navigate; it was as if my fingers had stopped cooperating with my direction. At first it just seemed weird and only faintly worrisome. Is it my imagination, or am I getting clumsy? Is this really a thing? But over the months these unexplained symptoms slowly progressed to include my wrist, making cooking, doing dishes, and typing a little more challenging.

After parking my bike and checking in at the front desk, I was promptly invited down the hall to the doctor. He asked me to sit. He looked pained.

Taking a deep breath, he said, “I’m afraid to tell you that I believe you have a condition of amyotrophic lateral sclerosis.” My heart pounded. My stomach dropped. I stared, waiting for him to explain. “Are you familiar with it? It’s also known as Lou Gehrig’s disease.”

Something within became a little thick and fuzzy. It was as if a blanket suddenly wrapped around my brain, cushioning me from extra input. My tears came despite my wanting to hide them. “I’m sorry,” I said, knowing they might make him uncomfortable. He responded with a gentle “Of course,” as if he were surprised I was holding it together at all.

I asked if the illness shortens people’s lives. He nodded but said nothing more. Not really knowing what else to say but desperate for some hope, I asked, “Should I eat in some special way?” He shook his head and said it wouldn’t matter. At this point I realized he was no longer looking me in the eye.

I then managed to stumble down the hall and walked outside until I found a secluded spot along the creek. It was there, sitting in the damp grass under the dappled morning light, that I first learned everything about my new diagnosis the doctor had not been willing to tell me.

As I scrolled through the search results on my phone, I read that ALS has no known cause and no cure. Treatment is practically non-existent and really designed only for comfort. It’s a process of progressive, inevitable motor neuron death, often starting in a limb and then quickly spreading to devour one’s entire body. The mind is rarely affected. Late-stage patients would need a feeding tube and a breathing machine. Most live between two and five years after diagnosis. In that time, they become quadriplegic with no voice, eventually dying of suffocation once their lungs lose their strength. The death rate is 100%.

I called my husband, John, and broke the news to him. Stunned, he said he would cancel his clients and meet me in the park near his work. On my way over, I noted all the innocent people whose lives hadn’t just been pulled from under them. There they were, in their own everyday life dramas, jogging their dogs or rollerblading with their headphones or strolling with friends, lost in conversation: “Get this! And then Kerry said…!”; “I don’t know which job would be best…”; “… and then I’ll have to take a red-eye flight to…” I’d listen to these snatches of conversation, knowing these people were completely unaware of their incredibly good fortune. By all appearances they still had a future, or at least a convincing illusion of one. I simultaneously envied them, prayed for them, and pitied their lack of awareness of their own vulnerability. This mix of feelings would quickly become a familiar flavor.

When I met John, he threw down his bag to embrace me. After some moments together in silent trembling he choked out, “We’ll get through this together. We’ll get through this.”

I nodded and buried my wet face in his chest.

Throughout this week, I reflected on my lack of serious concern about my health up until the moment I was diagnosed, how I had so blindly assumed I wasn’t a real candidate for a deadly disease. After all, these types of things happened to unlucky people,  older people, and, most importantly, other people. Maybe even people who were careless or sloppy about their health. If anyone ever had an “in” with the fates, I must, because I was so intentional about taking care of myself physically, emotionally, and spiritually. Right?

I exercised daily and went to yoga weekly. I smoked nothing and drank next to nothing. I hadn’t eaten fast food since I was a teenager. I’d been abstinent from sugar for almost a decade. I’d been advancing steadily through a series of meditation practices under the tutelage of a respected Buddhist teacher. I went to my own psychotherapy.

I wanted to be triumphant in my own hero’s journey; I wanted to manufacture a miracle.

In my mind, all this meant one thing: I was good, damnit. I was “good” at respecting the literal and energetic laws of well-being, so it seemed obvious that life should be good to me in return. This was me after all, the center of my own special universe, and I hadn’t seriously entertained the possibility of a major misfortune. Or, if a misfortune happened, I assumed it would be of the sort where I could get the treatment available to fix it, and the strength of my resolve and determination and wits and karma would carry me through.

This kind of magical thinking had managed to continue unexamined even though I knew from working with therapy clients from every walk of life that shit happens, to everyone, often at the worst possible times. And it persisted even though I had long studied the Buddhist teachings on the nature of impermanence, which say all things “good” and “bad” inevitably change and that “death comes swiftly and without warning.”

I had so many questions as I attempted to make sense out of the senseless. I wanted to know what had gone wrong in my life and body, and what to do about it; what my illness meant, what I needed to learn from it, and most importantly, how to heal. I wanted to be triumphant in my own hero’s journey; I wanted to manufacture a miracle. And I was prepared to use every ounce of will and wit I could muster to make it happen.

In the months before my diagnosis, I had been nearing the completion of ngöndro, a set of practices in the Vajrayana path of Tibetan Buddhism. Ngöndro entails many hundreds of hours of contemplative practices, including physical prostrations, mantras, and visualizations, all meant to build on each other to wear away the various egoic blind spots that shield us from the brilliant, interconnected, groundless nature of reality.

At least, that’s how ngöndro had been presented to me by my teacher. And, in many ways, the path delivered. I slowly softened, became less guarded, more present. I had been studying with this teacher and in this community for ten years. It felt like we were all doing something special, something sacred, and I wanted to be “all in.”

Although I had been a diligent student all along, I lacked confidence in the outcome of my efforts. I suspected I wasn’t really getting whatever insight I was supposed to be getting and likely needed to work ever harder to find the calm, luminous awareness that was supposedly already within me. I especially longed to experience those moments in meditation where the breathtaking beauty of reality reveals itself so powerfully that one can’t help but gasp in ecstasy. Despite my teacher’s reminders that these experiences were unnecessary and sometimes even distracting to a true understanding of the path, I wasn’t convinced. I’d sit in retreats during special teaching sessions, trying hard to will myself to relax enough to let go, and, little surprise, it didn’t work. Instead, I often felt completely, utterly ordinary, catching myself wondering when the practice session would end so I could go for a walk or make some toast.

“I’m just not getting it! I’m really… just, basic,” I would confess to my teacher and any other senior practitioners who would listen. They would all assure me I was, in fact, getting it, insofar as there was an “it” to “get.” Yet my spiritual imposter syndrome persisted, with me assuming I had fooled them all into vastly overestimating my meditative abilities.

Still, though I carried these insecurities and doubts as constant companions, I felt committed to the process and was planning to steamroll ahead. I devoted two or more hours most days to practice, and I knew some inner alchemy was taking place, even if it was painfully slow. So I figured, though I may forever be a remedial student, at least I was making some tidbit of progress, if through nothing other than my stubborn willingness just to sit down each day and follow instructions as best I could.

Days after the diagnosis, my teacher tried to support me by scheduling a meeting to help me modify my practice to the new situation. His suggestion to double my daily hours of meditation felt like a good idea until day two, when it started to feel like punishment more than support. Something in me knew that my belief in earnest striving had been irrevocably punctured. Pushing for realization now seemed useless. In some respects, I suspected my journey of waking up had only just begun.

Later that week, I lay next to John, grateful to have made it to the mattress. My second-opinion appointment had yet to arrive, affording me a sliver of hopeful comfort that this whole nightmare could soon dissolve. But this hope was buttressed by fear, what-ifs, and problem-solving fantasies, now a rapidly paced news scroll underlying every waking moment. This seesaw swinging between imagined grim or redemptive futures was crippling, rendering slumber my new best friend, a forgiving respite in the landslide of unknowns.

I pulled the covers up as far as I could. Perhaps I had taken a bath before bed, or perhaps I was simply exhausted; either way, I relaxed effortlessly, nursing the gradual surrender into sweet unconsciousness. But rather than drifting off to sleep, as I lay there semiconscious, I gradually became aware of a vivid, full-body experience of falling.

Down…

down…

down.

I fell for a good twenty seconds or so—down, down, down—enough time to observe that I was clenching all my muscles in fear, desperate to stop the wild powerlessness. It was as if I were physically arguing with gravity, hoping if I resisted strongly enough I could make it all stop and prevent the eventual violent smack against the hard earth.

Yet halfway into this fall, without conscious intention, something within just relaxed. My muscles slackened as I realized I could simply exhale with my whole body instead of holding my breath. I was still falling, but my fall became easy, just a floating sensation that happened to be quick and downward through space. My body surrendered to a gravitational process over which I had no control.

And then it stopped. I didn’t hit the ground—the whole falling sensation just evaporated as quickly as it had started, even if the relaxation itself felt timeless. Once again, I became just a person lying in bed, a bit stunned, trying to grapple with what had just happened. While it might have partly been a natural by-product of a nervous system on the fritz, I knew it wasn’t so mechanical. It felt unusually foreign and important, like something I would be wise to remember. It was as if something outside of me—or perhaps deep within me—had offered a teaching so my body could learn to relax into what I was facing with a certain grace.

From the beginning, I was determined to make a triumphant return from the underworld of terminal illness. Despite conventional medicine’s utter lack of interest in helping, I had been willing to try nearly everything and anything over the next three years of battle. I had tweaked my diet in dozens of ways. I did liver and gallbladder flushes, glugging olive oil and lemon juice before bed and hoping for a miracle in the morning. I tried dozens of protocols with various wonder supplements, each new combination promising to conquer what the last round had not.

There were energetic treatments such as Reiki and bio-resonance. There was acupuncture. There were bitter sludges of Chinese herbs. There was tapping, visualization, affirmations, shamanism, and endless meditation.

And I got so very tired. Physical exhaustion was a given, but it didn’t compare to the emotional and mental fatigue of investing all my hopes into failed treatment after failed treatment. All my best efforts had so far barely caused a ripple in my physiological deterioration. It became harder and harder to imagine that my body would respond to anything. I lost faith and enthusiasm. And I had no idea where to find it again.

Against this backdrop I began to admit there were no reasonable options left for pursuing recovery; that continuing to drag John along in my longshot efforts was unkind, bordering on absurd; that it was finally time to cease this mad searching, this fighting, this striving, and let go. These thoughts pierced through my mind with a hot, searing sting.

As I sat with this stubborn impulse over the following few days, something tangled inside began to unravel. I knew dropping the fight by this point would be no small change in orientation.

This was not the first time I had cried uncle. Overwhelmed with grief and frustration, I’d surrendered again and again to the emotional pain of the situation, which usually resulted in a long cry, allowing me just enough relief to plow forward with my determined project of changing my fate. But fully surrendering to the inevitability of my progressing disability had an altogether different feel. If working extremely hard for physical recovery yielded zero results, perhaps recovery wasn’t the right goal for me anymore. Not that I didn’t deserve it, but maybe I deserved the lessons that come from surrender and grace even more.

Maybe it was time to redefine what healing would be for me. And if I stopped fighting my physical reality, I could just relax into the freefall, much as that experience that came over me a few nights after diagnosis had taught me to do.

I made a decision. I would leave my fate up to something beyond my ego. My own tricks and tools would no longer be in the fight. With this decision, my psychic pressure valve started to hiss, allowing the many long months of struggle to slowly deflate.

Ending the fight with the illness in no way meant I was powerless. In fact, surrender meant that I could reclaim my locus of control. I now knew no guru could save me. No doctor could save me. No shaman, intuitive, or miracle worker could save me. My own best ideas had not saved me. And focusing on physical treatments, though understandable for a time, distracted me from having to grapple with everything that I still didn’t know how to fully grapple with: my pain, my fragility, my rage, my potential, my passion, my desire to belong on this fucking hard but beautiful planet, my desire to be and do enough and my fear that I never would. To mine whatever jewels I could from this situation, I’d have to turn within to my deepest questions, to heart questions. I’d have to wait in darkness and listen like I’d never listened before. My dear sweet self, what seems to be the root problem? Is there truly a problem at all? What will nurture my spirit, and what does my body need now? What do I most need to let go of, and what am I most hungry for? And most importantly, what is the true healing I seek?

I was now free to explore what of me might still be left glinting in the rubble of my former life, despite my paralysis and progressive decline, despite everything I’d already had to let go of.  By late summer of 2019, I had settled into a simple routine, rarely leaving the house except for a doctor’s appointment or a drive through the foothills with John. Whereas my life had once been cluttered with work, exercise, errands, household projects, travel, social events, and generous planning for the future, my choices were now simple. I could nap; I could write; I could sit on the deck and watch the squirrels fight and the grasses sway; I could meditate or read great literature. I could reflect on my kooky and colorful dreams; I could get lost in albums I loved. I could slowly tap out a sparse conversation with a visitor, allowing for deep breaths from both of us. With eye-gaze technology that allowed me to operate my computer visually, I could connect to the internet. Even my surfing somehow felt more interior and spacious.

While artists or meditators sometimes go to great lengths to create situations of solitude, my body was essentially creating a solitary retreat for me, forcing me to slow down and beckoning me to listen. I realized if any illness is capable of encouraging introspection, I’d been awarded the most ingenious version. I could still question, learn from my mistakes, choose consciously to approach things differently. I could comfort, counsel, and advocate. I could appreciate myself and everything I’d survived. I could let my heart break further than I ever thought possible. I was still a wife, daughter, sister, friend, and ally who could reflect on everything unique and yet stunningly ordinary about my human life—my aching, imperfect, exquisite human life, which currently still existed.

Loss itself is not a gift; loss is just loss. Pain is not okay just because we can grow from it.

Throughout my life, I had hungered for what was next, as if the true satisfaction was held in the distance somewhere, dependent on the proper arranging of circumstances—the right home, the right work, the right love, the right skills—and on leaving behind the wrong emotions or habits or hurts. Yet in the process of waiting for my never-ending desires to be actualized and my neuroses to be neutralized, I often missed the goodness constantly chirping at my own feet, begging for attention and appreciation, begging to have me rest, look around, and say, “Ahh. For today, this is enough. My life is already enough.”

To my surprise and delight, I found that marching further into the disablement of my condition did not necessarily mean greater despair. I could relax in contentment instead. In fact, I could even discover some joy while living in suspended animation between worlds. Despite the doctors who called this the worst possible disease, despite the people who claimed they would rather die than experience my fate, my life still had value. It was still, to me, a life worth living.

Even if the promise of hidden blessings—of jewels to be mined in the rubble of misfortune—provides some comfort, the idea itself deserves care and nuance, and it is probably best left up to each survivor to decide how much—and when, if ever—it’s worth embracing.

Loss itself is not a gift; loss is just loss. Pain is not okay just because we can grow from it. We never need to be blown apart just because we can learn from the act of piecing ourselves back together. And being able to mine meaning does not necessarily make it all worth it. When something as precious as our own health or the health of someone we love is snatched away, we might not ever find the necessary spin to see a bright side; we might not ever identify a happy ending.

It seems the more permission we give ourselves and each other to have all the feelings and questions—without offering tidy answers to shunt the process—the more empowering it’ll feel to define our own meaning, in our own time, as best we care to. We may remember loss is as old as time, and we are born into vulnerable bodies, loved by and loving creatures also in vulnerable bodies.

But if heartbreak is a given, so is resilience. Sometimes just enduring itself is meaningful, affirming that we can keep going even when life has us in a headlock and our whole being whimpers in resistance. The more we can rest in our vast, broken-open heart without flinching—and the more we can cherish the body we have no matter how limp or exhausted or disfigured—the more equipped we are to inhabit with courage the life with which we’ve been entrusted.

Eventually we can gather together the lessons learned in survival and share them with others—even if it’s simply a quiet internal mercy for everyone who feels similarly broken. In this way we may weave our pain into a tapestry that warms others or protects them or simply keeps them company. In this way we allow something meaningful to arise, and in doing so we make the damn jewels.

And that, friends, may just be the real miracle.

♦

From No Pressure, No Diamonds: Mining for Gifts in Illness and Loss by Teri A. Dillion, Pomegranate Publishing. ©2020 by Teri A. Dillion.

The post Making Our Own Jewels appeared first on Tricycle: The Buddhist Review.

After giving birth to twins, playwright Sarah Ruhl was diagnosed with Bell’s palsy, a paralysis of the seventh cranial nerve that severely limits facial expression, even—and especially—one’s ability to smile. Though most who suffer from this condition get better within a year, for Ruhl, the road to recovery has been much slower. In her new memoir, Smile: The Story of a Face, Ruhl reflects on her journey of reoccupying her body and reclaiming her capacity for joy.

In a recent episode of Tricycle Talks, Tricycle editor-in-chief James Shaheen sat down with Ruhl to discuss Zen koans, the overlooked beauty of asymmetry and imperfection, and how Tibetan Buddhism brought her back to her Catholic roots. Read some excerpts from their conversation below, or listen to the full episode here.

You write that asymmetry is often associated with villains or the grotesque, yet you suggest that an asymmetrical person can be a protagonist rather than just the antagonist. How does asymmetry show up in your art and the stories you tell? What does it look like to honor the asymmetrical? In some ways, I don’t know yet. I think I’m still finding out. But in other ways, I think it manifests in my stories as a kind of distrust of Aristotelian thinking, where everything has a clear cause and the structure has a nice arc with a catharsis and a little plateau and then a denouement. I’ve always thought of my plays as more Ovidian. In [Roman poet] Ovid’s Metamorphoses, the tales unfold and unfold and surprising, sudden transformations happen and people turn into beasts and trees and there’s no causality. I think that is how the body sometimes functions: you wake up and you’re transformed. It’s not a defect of your character that caused it. It’s just the body. I’ve always been interested in that kind of storytelling rather than a clear symmetrical arc with a moral lesson. I remember being so moved by reading Franz Kafka’s Metamorphosis in college when I was 18 and my father was sick with cancer. Everyone around me was reading the story abstractly, and for me, it felt really emotional, this idea of a person waking up and not recognizing their body, and then the bug is swept away at the end by the carpet lady with so much detritus and the family moves on. I found it so sad.

You also write about how you eventually came to see imperfection as how we meet each other and care for each other. Can you share more about how asymmetry and imperfection invite care? We don’t get to know each other through telling each other how perfect and wonderful our lives are. We get to know our friends through hardship. Often, we fall in love, and there’s usually hardship—it’s not just rainbows and dolphins. There are definitely some relationships that are overly forged in hardship, so it’s important to have a balance. But I do think that when we allow ourselves to be fragile and seen, that’s where real love comes in—real love and acceptance from others. If you’re perfect, what is there to accept? 

You had lunch with the theater critic, Jonathan Kalb, who also has Bell’s palsy, and you write about the empathy you felt from seeing his face. Could you share more about that experience and how it helped you to develop compassion for your own face? I remember when Jonathan walked into the restaurant, I knew immediately who he was, and I could recognize on his face that he was still going through something I was going through. His face was like a mirror. I could see that he was turning away from me when he laughed so as to not show the expression of laughter on his face, which I did too. I felt like I looked like a strange pirate when I laughed because my smile was so asymmetrical. It can be hard to eat when you have Bell’s palsy because sometimes the muscles on one side of the face are weaker, so you might drool, or your food might come out. We were eating dumpling soup, and Jonathan’s dumpling exploded. He rushed to apologize, but I said, “No, I’m so happy I don’t feel self-conscious eating this cucumber in front of you.” It took me so long to seek out someone else with Bell’s palsy to have lunch with. But there was such solace. I think part of it was seeing Jonathan turn away from me while he laughed and knowing how I felt as the observer. I thought, “No, look at me when you laugh. I don’t judge your face.” It made me ask myself, why then am I doing that? It really changed the way I viewed myself.

At that point you realized you had more compassion for others than you might for yourself. Has that changed at all? Yes, I hope it has. Honestly, writing this book was a healing process in that way: it gave me more compassion for myself. I think I blamed myself in weird ways for my illness. I thought that I wasn’t resting enough or doing enough or that I must have done something wrong rather than acknowledging, “Well, Sarah, that was kind of a hard knock to have two twins in the NICU [neonatal intensive care unit], get celiac disease, and get Bell’s Palsy.” I was always blaming myself for the ways in which my body was disappointing me and keeping me from moving forward in my life, and I never sat down and acknowledged how much I was going through. I do think it took writing the book to have a little bit more self-compassion. It’s partly due to the process of making sense of: leaving old metaphors behind and making sense of a story that didn’t make sense because it had so many constant ruptures, in the same way that Kafka talks about waking up and being a bug. Nothing made sense to me about the story of my face betraying me before writing it all down. It just felt like this sudden rupture in my life, and somehow writing it down gave me compassion because I was also making sense of it for myself.

For so long, I didn’t even speak about the Bell’s palsy. It was just something I was going through privately. It was so helpful to begin speaking and writing about it. When I finished the book, I was in the car driving with my daughter, Anna, who was then about 13. She was listening to me talk to my editor about the book coming out. Afterwards, I asked her, “Was that interesting to you, that conversation about Bell’s palsy and depression?” And she said, “Oh, it was. I’ve always thought of your face, Mom, as a beautiful house that had a wall suddenly fall down, and you spent all this time trying to build it back up brick by brick, and you couldn’t quite, but when I look at your face, all I see is my home.” And that just killed me. It was so beautiful. 

♦

Listen to the full podcast with Sarah Ruhl here:

For more, read an interview with Ruhl here and an excerpt from Smile: The Story of a Face here. 

The post How Imperfection—and Attention to It—Invites Care appeared first on Tricycle: The Buddhist Review.

In 2010, Suleika Jaouad graduated from Princeton and moved to Paris with dreams of becoming a war correspondent. Soon after, she was diagnosed with acute myeloid leukemia and found herself in a very different battle zone from the one she’d imagined. “The brilliant Susan Sontag said we all have dual citizenship, in the kingdom of the sick and the kingdom of the well, and it’s only a matter of time until we use our passport to that other place,” Jaouad says. In her new memoir, Between Two Kingdoms, she tells the story of her four-year fight for survival and the 15,000-mile road trip around America she embarked on with her dog, Oscar, after she was cured.

In 2013, Jaouad won an Emmy for Life, Interrupted, a New York Times video series chronicling her illness. Her 2019 TED talk, “What almost dying taught me about living,” has garnered over four million views. During the pandemic, she founded The Isolation Journals, a global initiative with over 100,000 participants that offers community writing sessions, book club discussions, and studio visits with well-known authors and artists.

“I needed to believe that when your life has become a cage, you can loosen the bars and reclaim your freedom,” Jaouad writes in her memoir. She spoke with me over Zoom from her rural New Jersey home about how she’s succeeded in doing this, and we explored the connection between Buddhist principles and her harrowing journey back to the kingdom of the well.

You often say that you’re “exploring the in-between places.” How does this relate to your illness and recovery? When I emerged from cancer treatment, I expected I would quickly and organically find my place among the living again. Survival had been the goal for the better half of my twenties, and I expected to feel grateful and excited and to have a sense of closure. Instead, I felt incredibly lost. I found myself in a liminal place: I couldn’t return to the life I’d had, but the way forward was unclear. That in-between place felt like a wilderness of survivorship. What made it particularly challenging is that we project the hero’s journey narrative arc onto survivors—especially cancer patients. After surviving the unimaginable, you’re expected to go forward better and braver and wiser. A strange code of silence is created around the hardships of navigating the aftermath of an experience like this.

In Tibetan Buddhism, bardo is an “in-between state.” The journey from death to rebirth is a bardo, and from birth to death is another; other bardos include times when we’re ill or have an accident. Some years ago I was hospitalized with a life-threatening disease and, staring at the white ceiling of my room, I recalled a story about my Tibetan great-grandfather. One morning in Tibet, he was buried in an avalanche. Praying to Guru Rinpoche—the Indian spiritual master who wrote The Tibetan Book of the Dead, a guide to traveling through bardo—he thrust his hand up through the snow, and the men aboveground pulled him out. The central lesson of his story, and of The Tibetan Book of the Dead, is to accept reality but not give up. Does this resonate? It resonates so deeply. I have my reading and research cut out for the weekend! I’m intrigued and excited to learn more about bardo.

In that first year out of treatment, I was fixated on moving on. Within a couple of months, I arrived at the conclusion that moving on is a myth. It’s exactly what you were just describing: an attempt to compartmentalize the most painful passages of your past, to leave them behind and skip over the work of grieving and healing and reckoning. I needed to figure out how to integrate what had happened into my present. To accept that reentry wasn’t what I’d imagined, and let go of the shame I felt around how difficult it was. Of the ten young cancer comrades I befriended while I was ill, only three of us survived. I felt survivor’s guilt, that I should be grateful to be experiencing the challenges of reentry. I couldn’t talk about it with my family because I’d already put them through so much. I couldn’t talk about it with my medical team, because they were focused on curing cancer. I couldn’t talk about it with my crew of friends because I didn’t want to sound insensitive, especially to the ones who were still in treatment or might never be cured. Once I was able to accept that, I began to look to the language of ritual, to rites of passage like funerals and weddings and bar mitzvahs, the ceremonies that allow us to shoulder complicated feelings and move forward.

Do you still feel some of the difficulty of making that transition? I’m still in that between-place. I struggle with the long-term side effects of my treatment. I spend a lot of my day horizontal, working in bursts because of fatigue. But in other ways, the struggle does feel behind me. I don’t think about illness every day, which was unimaginable even just a few years ago.

You say in Between Two Kingdoms that writing saved you. In what way? I do two kinds of writing. One is the writing I do in the privacy of my journal. The journal is an expansive, liberating space where you get to show up as your most unedited, unrevised self and do some untangling; where the stakes are low. You’re not writing for a public, you’re writing for yourself. That practice of writing without the anxiety of accomplishment or needing to write beautiful sentences saved me. It provided the space to give ink to the isolation and the frustration, the anger and heartbreak. It offered a measure of narrative control at a time in my life when I had to cede so much control to my illness.

What was writing your book like for you? The first part was hard because of recounting my illness and the losses that came with it, yet it was also a great joy to write. I knew what the scenes were, what I wanted to say, and beyond that, I got to live in this world with these people, many of whom are no longer alive. I looked forward to waking up in the morning and bringing those memories to life. The most challenging part came in the second part of the book when I struggled to figure out how to write about recovery and reentry. There was no neat narrative arc or resolution. I was trying to write in the past tense, as in the first part, and it felt like I was forcing a measure of distance I didn’t have. When I realized I could switch to the present tense midway through the book, that broke open the writing because I was still living recovery and reentry.

You say in your book, “To learn to swim in the ocean of not-knowing—this is my constant work.” This relates to the Buddhist concept of beginner’s mind, of being awake to the present and embracing uncertainty. How do you deal with not-knowing? In moments of upheaval and uncertainty, there’s clarity and knowledge and perspective to be gained, but we have to live into those possibilities. That’s how I wade through the uncertainty without it becoming anxiety. I try to pay attention to it and to where it’s leading me and what questions are rising to the surface. I get very quiet and still when I’m in a state of high uncertainty. I take the time to be with myself, with my thoughts, and see what can be learned even though not-knowing often feels uncomfortable and painful. It’s a muscle that I’m always exercising and building as I figure out how to moor myself.

One of the most powerful aspects of the bardo concept is that we create our experience as we travel in “the between.” We’re artists of our lives, fashioning our experience through our choices and actions, just like my great-grandfather did when he was buried in the snow. I’m reminded of a line from Viktor Frankl, who was a psychoanalyst and survived the Holocaust camps. He talks about how between stimulus and response there’s a space, and that space is our power to choose our response. In our response lies our growth and our freedom. Just because life breaks us at moments doesn’t mean we automatically get stronger. There are many choices made between the break and what we make of the break.

“In moments of upheaval and uncertainty, there’s clarity, knowledge, and perspective to be gained, but we have to live into those possibilities.”

When I was sick, I spent a lot of time researching artists and writers who were bedridden for a large part of their lives. I looked to Frida Kahlo, who had a streetcar accident when she was young and suffered injuries that left her bedridden. In that space of confinement, she began painting the self-portraits that made her one of the most famous artists of all time. I was inspired by the way she interrogated that experience of physical, spiritual, and psychic pain. There are so many other examples—Matisse, Proust, Virginia Woolf, Roald Dahl—of artists who’ve written about how being in bardo, as you say, invites you to convert your isolation into a creative exploration and a creative solitude. One of the biggest lessons I learned during my season of illness is that survival becomes a creative act.

In your TED talk, where you share the lessons that nearly dying taught you about living, you discuss impermanence. You say, “Every single one of us will have our life interrupted, whether it’s by the rip cord of a diagnosis or some other kind of heartbreak or trauma that brings us to the floor.” Even though impermanence is an inescapable fact of life, we tend to be in denial about it. How has your relationship to impermanence changed? Like a lot of young people, I felt I had time. Time to figure out who I was, time to find what I wanted to do with my life and take the steps to get there. But when I received my diagnosis, my doctors told me I had about a 35 percent chance of long-term survival. That first summer in the hospital, after a grueling six weeks in a small white room with fluorescent overheads that I wasn’t allowed to leave, I learned that the standard chemotherapy treatments had not worked and that my leukemia had become much, much more aggressive. I was going to need to enroll in a clinical trial and eventually have a bone marrow transplant, which is its own very risky procedure. So impermanence came clearly into view for me. I began to focus on what felt meaningful now that everything had been stripped away. I was focused on a gentler approach, following my curiosity and intuition, without worrying about the outcome. At a school like Princeton, there’s this anxiety of accomplishment, of milestones and having a career trajectory. A sense that you need to have your five-year plan and your ten-year plan and your fifteen-year plan. Staring my mortality straight in the eye removed any illusion of being able to plan, which was strangely liberating.

How does the future look to you now? A life-threatening illness pins you to the present. Being sick made me feel like a second-class citizen in the land of time. Time came to a halt and felt like a waiting room: waiting for biopsy results, waiting in the doctor’s office. Waiting for better days. I couldn’t dwell on the past because it reminded me of all the things I could no longer do, the plans and dreams that had vanished. And thinking about the future was frightening because I didn’t know if I would exist in that future. So I began to think in week-long increments, month-long increments, eventually hundred-day increments. That was as far ahead as I felt comfortable making plans. I knew that, as Joan Didion writes, life can change in the ordinary instant, and I had a high chance of relapse. Any bruise, any day where I felt exceptionally fatigued, immediately brought that possibility back to the surface. I still have a difficult time imagining myself in old age. I think of my future in terms of whatever project is on my desk—whether that’s building a garden at my new home or this next book project. For committing to projects, I’ve graduated from thinking in hundred-day increments to thinking in six-month increments, which feels like progress.

In the hospital, you dreamed of white sandy beaches. What do you dream of these days? Carving out space and time to just be home. If you were to interview my friends and family, they’d tell you I work too much, and that’s true. But what I dream, and what I hope for myself, is that I can create a sense of home and self-value that’s not rooted in work. That allows for more ease, a less structured way of living and being, and anchoring myself. Simple joys like walking my dogs in the woods by my house or gardening.

Lately I’ve been thinking about what a challenge it is to slow down. I’ll plan to go to a coffee shop with a book, or take my dog to the park, but then I get caught up in work. Have you developed strategies to shift toward a more easeful way of living? It’s a constant work in progress. I am a work in progress! But during the pandemic I formed a small quarantine pod with a fellow author, Elizabeth Gilbert, who lives nearby. We began a daily ritual of meeting in my backyard and doing a breathing meditation for about 35 minutes, then cold-plunging in the swimming hole by my house. It was already difficult, and in October it became even harder. By January, our swimming hole was more like an ice-skating rink. But forming those rituals and holding to them has been my first step toward attaining balance.

“A to-feel list speaks not to what I want to accomplish that day or that week but to what I want to feel.”

Is it hard to tear yourself away from work to meditate and jump in the swimming hole? It’s hard and I look forward to it. Another thing I’ve been doing, in my journaling practice, is before I write my to-do list, I write a to-feel list.

What’s a to-feel list? A list that speaks not to what I want to accomplish that day or that week but to what I want to feel. It helps me reorganize my priorities and do what I need to do to feel the feelings on my list.

I like the idea of putting “to-feel” before “to-do.” Otherwise you can feel disembodied, like you’re just plowing through tasks. When I fill my days with a never-ending list of to-do’s, I’m not living into the possibilities of prioritizing how I feel. I end the day feeling spent and like a shell of a human being. During the clinical trial, which was especially physically harrowing, I thought, “If I survive this, it has to be for something. It has to be to live a good life, a meaningful life, a happy one.” I think about that all the time.

The post The Myth of Moving On appeared first on Tricycle: The Buddhist Review.

Ever since I was 18 and my father was diagnosed with cancer, I felt I could not pray for an outcome. When my father got his diagnosis, and already had stage four cancer, I was pretty sure he would die in the near future. He could barely walk. To pray for his miraculous recovery when I was an agnostic was not possible, but even as someone raised Catholic, it felt ignoble, blasphemous. I should pray, I thought, for the courage to accept his sickness. I should pray for his peace of mind, but not for an outcome. In the back of my mind, I knew, if I prayed for an outcome and miraculous return of health that did not come, it might tip the balance of my faith which was already not sturdy. It would turn me from an agnostic to an atheist. No, God does not intervene in bodily affairs, I thought, as a teenager.

As a grown-up—when my face was not getting better after being diagnosed with Bell’s palsy, a paralysis of the seventh cranial nerve—I felt that I could not pray to God for my face to get better. Not only did it seem faithless, it seemed vain, considering all the trouble of the world.

I refused to think of prayer as gambling. Like: please, God, let my dice roll a three and not a six. Being raised Catholic, one thinks one can even get in trouble for praying wrong. Flannery O’Connor wrote in her prayer journal:

My dear God, It takes no supernatural grace to ask for what one wants and I have asked You . . . but I don’t want to overemphasize this angle of my prayers. Help me to ask You, oh Lord, for what is good for me to have, for what I can have and do Your service by having. I have been reading Mr. Kafka and I feel his problem of getting grace.

The hope to obtain grace—something that cannot be gotten—can it even be asked for?

***

I spoke to a theater colleague recently who had been through hell when her baby granddaughter died. She said she was disappointed with some friends and grocery store acquaintances who kept saying, “I cannot imagine what you are going through.” My colleague said she thought, “Well, you could try. You could try to imagine. Then you could at least say instead: I can only imagine what you are going through.” This felt like an important moral distinction.

I can only imagine.

I remember when my father was diagnosed with cancer, he went from being a healthy, athletic 52-year-old to an invalid in a matter of days. One day, my mother was pushing him gingerly in his wheelchair down the block in front of our house. It hurt his back terribly when the wheelchair went over a bump in the sidewalk, and he cried out in pain. So my mother simply turned the wheelchair around and went back home.

A neighbor who saw us out walking said later to my mom, “I don’t know how you’re doing it. You’re so brave. I cannot imagine what you’re going through.”

My mom said that she didn’t feel particularly brave; it was a nice day, so she was taking my father for a walk. My neighbor’s polite expression of empathy was, in a way, a negation of the experience of being inside illness. A boundary that many people do not wish to cross.

But don’t we need to cross over? Is this not a moral imperative, for art, but also for social discourse? Don’t we need to imagine people different from ourselves, people whose experiences we can only imagine?

***

Is the self the face? A person, their personhood, comes to be associated with their face. It is our signifier for identity. A person is not their arms, or their legs, but a person is their face. But what if we are not even our faces?

I read that Shantideva, the 8th-century Buddhist monk, once wrote: “The teeth, the hair, the nails are not the ‘I’…If such a thing as ‘I’ exists indeed then terrors will torment it. But since no self exists at all, what is there left for fears to terrify?”

***

One day, commuting to teach in New Haven, I was standing in Penn Station, reading Thomas Merton, when I ran into a monk in saffron robes. It was, in fact, Lama Pema, a Tibetan monk I’d met when rehearsing my play The Oldest Boy at Lincoln Center Theater.

We were happy to see each other, and we rode together from New York to New Haven. He was riding to Vermont where he was giving a teaching. I could not turn from his gaze on the train, so direct and present it was. Lama Pema turned small talk into dharma talk and said to me over and over, not necessarily knowing about my Bell’s palsy, but possibly observing it: “You can always choose to smile, no matter what. It is always a choice to smile.”

This felt so different from being instructed to smile. It was not a directive, it was a summoning. There is a concept in Buddhism of coming to know, through meditation, your original face. The 13th-century Chinese Zen master Mumon put it this way:

You cannot describe it or draw it,
You cannot praise it enough or perceive it.
No place can be found in which
To put the Original Face;
It will not disappear even
When the universe is destroyed.

I had been so busy looking for my old face, I forgot to look for my original face.

♦

Adapted from Smile: The Story of a Face by Sarah Ruhl © 2021 Sarah Ruhl. Reprinted by permission of Simon & Schuster, Inc.

The post I Can Only Imagine appeared first on Tricycle: The Buddhist Review.

When Karen Derris was diagnosed with cancer, she turned to books—and Buddhist books in particular. A professor of Buddhist narrative and ethics, Derris has dedicated her professional life to studying Buddhist stories, and they have, in turn, transformed how she thinks and lives. After her diagnosis, she began to seek out new ways of reading the stories she had long studied, now with an eye to her embodied experience of illness.

In her new memoir, Storied Companions: Trauma, Cancer, and Discovering Guides for Living in Buddhist Narratives, Derris shares stories from Buddhist literary traditions that have become her companions and compass, interweaving them with her own narratives of illness and trauma. Tricycle recently spoke with Derris about living with a terminal illness, our cultural discomfort with death, and reading as a mode of care.

 You’ve titled this book Storied Companions. What does it mean for a story to be a companion? When I was diagnosed with terminal brain cancer, I wanted to find ways to continue living well up to my death. While my loved ones were caring for me in every way possible, they didn’t have the resources to understand what it meant to be living under these new conditions. Often, that left me feeling very lonely, so I began looking for resources that could keep me company as I tried to stay alive with purpose and meaning. I kept turning back to Buddhist stories as a potential source for that companionship—stories I loved, stories I had been intensely engaged with for many, many years. These stories became companions and guides, and they were a key condition for living well while I knew I was dying.

How did Buddhist stories become companions for you? Different stories came to me as the nature of my illness evolved. It was a very relational experience: if my mind and heart were open, then the stories could give me space to step into them. They could reach out to me, but I also had to reach out to them—I had to create new ways of reading that honored my lived experience of impermanence. I was rereading them with a new purpose, and that purpose was how to live well with the knowledge the cause of my death was already inside my body.

A number of stories reached out to me in this way, and they came through long-held attention and intellectual practice. Many of them are what we might call mythological, and I had to be open to seeing them as true even though they contain dimensions that might seem far from our reality, like flying bodhisattvas or hidden codes and messages. If I could reread them with my heart and mind open to their truth, then they could accompany me and help me feel less alone.

One of the stories you focus on is that of Siddhartha and the four signs, sometimes called the four sights. How did this story help you feel seen in a world where the sick and dying are so often made invisible? We live in a society that attempts to avoid questions of death at all costs, and the story of Prince Siddhartha and the four omens is a great example of this avoidance. When Siddhartha is born, sages predict two possible futures for him: if he is shielded from suffering, he will become the world’s greatest emperor; if he encounters impermanence and the suffering it causes, he will leave the royal life and become the world’s greatest spiritual leader. As a result, his father, the king, shields him from suffering and keeps him safe inside the palace, surrounded by every kind of pleasure.

As he grows older, Siddhartha asks to leave the palace and see the city. His father complies but orders the city cleaned and decorated so as to hide all signs of suffering. The king’s men are commanded to remove all the old, sick, and dead people from the streets so that Siddhartha cannot see them. But the devas, or gods, know that Siddhartha must see these signs of suffering, so they carry the bodies of the old, sick, and dead back into view.

Siddhartha eventually sees each type of body, and these encounters with suffering create an existential shock for him. He asks his friend and chariot driver, Channa, if this will happen to him too, and Channa simply replies, “Yes.” Seeing these three bodies changes Siddhartha’s life completely, and when he sees the fourth sign, the renunciant, he is inspired to go forth and find a path to alleviate the suffering caused by willful ignorance of impermanence.

When I reread this story after my diagnosis, I started to understand it differently. For many people, knowing that I have a terminal form of cancer is something they don’t want to acknowledge—it’s too scary. No one wants to talk about it, no one wants to see it, and I end up feeling hidden or cast aside, just like the figures carted off by the king’s men. Now, I encounter this story from a different perspective: I am that sick body; I am that dying body; I am being hidden away. But at the same time, the devas realize that I have to be seen in order for Siddhartha to learn the truth of impermanence.

Rereading this story as a dying reader, I feel seen by it, but I also see that my impermanence can have purpose—that my embodied form of impermanence can have meaning if I confront it and have the strength to share it. And that’s what I tried to do with this book.

How has your relationship to impermanence changed through your diagnosis and through writing this book? Living with cancer has offered me a much deeper awareness of impermanence than I would be able to have through my dharma practice. My diagnosis gave me an embodied lesson in impermanence, as I suddenly found myself crashing into it, or it into me. Eventually, we will all encounter the conditions that will be the source of our dying; I know that that condition is already in my body. It’s in my brain, and it’s with me all the time. That brings with it a certain amount of fear. At different points in my life, I’ve tried to put that fear in a box on a shelf in my mental closet. But I came to see that ignoring it was not a good strategy—I needed to learn how to live with it.

Realizing that these Buddhist stories are there as a way of communicating impermanence helps me feel less afraid and less alone. In fact, if I am willing to step into these narratives and carry them with me through my life, I’m far from alone. It’s as if the stories are holding my hand as I move into my uncertain future.

 Do you have any recommendations for how to step into Buddhist stories? I think reading requires an openness to being transformed. I have to open myself up to the stories, to read them again and again and carry them with me, not just when I’m sitting with the text in front of me but also throughout my daily life. In the book, I share some of the practices that have helped me see these narratives as a mirror for my everyday experience, like identifying with a certain character or taking a particular line of a text into my body. These practices make the opportunities of tying my life to the stories more apparent.

The generosity of the dhamma is that it gives us these ties. But the reader does the work of noticing the connections and letting their relationship to their ordinary experience be transformed. These connections infuse my life with guidance from the dhamma, and this helps me in my search for meaning and purpose. This is one way reading becomes an act of care.

In rereading stories from this new perspective of impermanence and care, I’ve attempted to be a humble and grateful reader. I don’t make any claims that my way of reading these stories is the only way or that I know everything about them. Each story contains endless possibilities. I’m not trying to master this material—I’m simply sharing the gifts that have been so valuable to me.

The post Reading with the End in Mind appeared first on Tricycle: The Buddhist Review.

Half-asleep in my hospital bed, I hear the voice of my partner, Martha, from the cell phone resting on my pillow. The words, so often recited in Buddhist centers, are familiar: “I am of the nature to grow old,” “I am of the nature to have ill-health,” the first two of the five remembrances. They bring me back to my body.

After many hours in the emergency room, I have finally arrived on the ninth floor of Kaiser Permanente Oakland Medical Center, a dreaded destination in the moment when COVID-19 is overwhelming California’s health care system. Already in my life I have twice come close to death, and in each instance I was given the gift of more time. Will that happen again? My life could have ended at age 59 with third-stage cancer. But after major surgery and many weeks of chemotherapy, I recovered. For the next 15 years I inhabited my extra time joyfully and energetically and expected that life would continue in this way. My body had its own agenda, however. Ten years ago, another medical emergency—caused by scar tissue from the cancer surgery—struck, to situate me once again in that territory between living and dying. This second operation was extensive and ultimately successful. Although the recovery period was long, I slowly realized that I could be strong and happy once again.

Now I find myself back in a hospital bed, wracked by the familiar gut pain, the result of an as yet undiagnosed intestinal obstruction.

The doctors have quarantined me in a room where I will spend the next seven days surrounded by hanging implements and computer screens, a good place for the hospital workers to begin a series of tests. Settled here in my bubble, lolling between sleep and waking, I hear activity outside my door, but I have no idea what the area out there might look like. My world has shrunk to the dimensions of this room.

This first night, in the wee hours, two members of the surgical team appear, to my delirious mind seeming like genies materializing from thin air. Of their young, masked faces, I see only concerned eyes. They have the results of the X-ray—or CAT scan, or whatever other diagnostic exam they’d administered—and in my grogginess I struggle to pay attention to their reports. Then the nurses join us, and the surgeons observe while the nurses insert a nasogastric tube through my nose and into my stomach, in an excruciating downward probe that feels as if it shreds the tissues of my throat. “We’re doing all these things to see if we can solve the problem without resorting to surgery,” one surgeon explains to me. I am to have no food or drink; the tube will drain the corrosive acids from my stomach up into a bottle. In this way my stomach and intestines can “relax,” the surgeon tells me, and they hope that the gut will allow this obstruction to move or break up.

How is it that I can feel so alone when I am surrounded by nurses and techs? The answer is blunt and simple. No family members or companions are being allowed into the hospital because of coronavirus restrictions. I remember other hospital stays when I took for granted that someone would be with me—in person, not just by phone. Now in Room 905, I realize what confidence and comfort are offered by a loved person’s being near. Without this, I feel forlorn, like a castaway tossed up alone on a bleak stretch of beach.

But on my bed table, I see the blue cloth bag that my partner has sent up to me from the emergency room. As usual, she had known exactly what I would need: two issues of the New Yorker, a book by Rosie O’Donnell given to me as a freebie outside the library, a pen, and a notebook, out of which fall two photographs. One shows a richly colorful ancient sculpture of an Asian woman sitting with one knee up and one arm balanced on it. This is the bodhisattva of compassion, Kwan Yin, in the powerful posture known as “royal ease.” The other depicts Ruth Denison, my Buddhist teacher. She looks very old and utterly delighted, and I recall her voice speaking to her students about the eventualities of old age, sickness, and death.

“You’ll see,” she would tease us, “this will happen to you, too.”

Kwan Yin looks out at me from half-closed eyes, resting, as usual, in the midst of chaos, in a strong, still attitude.

It’s December, and we are in the midst of a surge of new coronavirus cases in California, filling all the beds in this giant hospital. A tech tells me that COVID patients are being situated down the hall from my room, and I remember the relentless news footage of desperately ill people, some attached to ventilators, unconscious on their bellies as teams of doctors and nurses labor to keep them alive. I feel in my own body the pain of this, and I react: It’s not fair! It’s against the natural unfolding of our lives to sicken this way! This can’t be the proper fate of these people! Then Ruth Denison’s rich voice quotes the remembrances, reminding me, “I am of the nature to fall ill; there is no way to escape from ill-health.” Heeding her words, I try to find the energy to practice tonglen—breathing in the suffering of all sentient beings, breathing out ease, tranquility, and tender caring. Tonglen, when practiced wholeheartedly, transforms painful feelings into light and spaciousness through the depth of one’s being. But I find myself too weak in my present condition to manage this. I can only simply be here.

F

our days into my hospital stay, the surgeon, Dr. M, tells me that the measures they have tried, hoping to alleviate my problem, have not been successful. It is clear now that a blockage exists in my small intestine, preventing the passage of any contents. “We’re sure this isn’t a recurrence of the cancer,” she says, “but you are in a dangerous situation and we’re recommending surgery—now.”

Dr. M and I have locked eyes above our masks. I see her intense desire that I understand.

“If you choose to have surgery,” she continues, “we’ll make a small incision in your abdomen and insert a tiny camera to look closely and identify the blockage and clear it.” She pauses and I see the shallow flutter of her mask as she takes a breath. “If that is not possible, we’ll have to make a larger incision, like the ones from your previous surgeries, to open up your belly and work on the obstruction, whether that is a tumor or some other cause.”

She steps back an inch. If I choose surgery, she explains, they might have to remove a portion of my intestine. The recovery would be long and difficult. Worst case, I would have to void my intestine into an external bag. I know people who live this way, and it is an inconvenience and discomfort that I would not want to choose.

Gazing into Dr. M’s steady eyes, I feel tears pushing up. I am so very sorry for myself and so very scared. I quell the tears, thinking they will just drag out our communication. But Dr. M, who has appeared so clinical and detached, sees my struggle and places a warm hand on my arm. Her touch is comforting; I feel a wave of gratitude.

“And what will happen,” I ask, “if I decide not to have the surgery?”

She tells me about the chronic pain and difficulty, the recurrence of the problem—all sounds grim—ending with the possibility that my intestine might rupture and kill me. Or, if I live, I might never be able to eat again.

She then tells me that the surgery, if I choose it, should happen today. “I’m going to leave you now, to give you some time to talk with your partner,” she continues. “I’ll be back in an hour. And if the answer is yes, we’ll immediately take you down to surgery.”

When she’s gone, I lie with the phone at my cheek. Finally the tears come, and I hear Martha crying, too. “I’ve done this before,” I remind her. “I will do it this time. But I don’t think I’ll ever do it again.” I know she does not want to hear this. I am 85 years old, and I know that yet another major surgery could leave me disabled, lost in dementia, or worse. Do I really need more time?

Ruth Denison’s voice reminds me, “I am of the nature to fall ill; there is no way to escape from ill-health.”

Eyes closed, I see the dark walls of a tunnel through which I am moving. I realize that at some point I will have to turn left or right, and that the left-hand tunnel leads to something deep and final. I bring to mind the few close friends with whom I would want to share my experience of surrender, and hold conversations in my head, just letting them know where I am and how I feel about it.

Later that day, I awake from a nap, and in a half-conscious state I see, propped on the blue bag, the photograph of Kwan Yin, sitting so erect in her beautiful red and gold trousers and robe, her eyes half-closed in compassionate attention, her presence a vivid embodiment of spiritual power. I bring her into the room with me, as I wonder, if I knew I were dying, whether she might spontaneously appear, splendid in her royal garments, to accompany me. Would I ask her to save me? Save me from what? No, I would want to know what she asks of me, and I would reflect on the ways in which I have been with her throughout my life: offering myself to her, learning and teaching her practices to other people, doing her work—writing two books about her. I wonder, has all this pleased her? Have I truly come closer to her through my efforts and studies?

In my future-vision I see us moving side by side, her radiance lighting the dark walls of the tunnel, the two of us earnestly speaking together as I realize she is letting me go. And I know it doesn’t matter, for it belongs to a different reality that will dissolve in succeeding moments. Then I hear a voice—the nurse telling me the orderly is here to take me to the operating room. So from my bubble I am wheeled out the doorway into the hall. And Kwan Yin slowly disappears.

After the surgery, I receive the news that there is no evidence of recurrence of cancer, and I find myself back in Room 905. Curled on my side, safely tucked in, I’m curious about what this body has just been through; I want to take a look and pull up my gown to see the long wound held together with staples, which march up my belly like a line of little soldiers. With each of my movements, their metal legs pull on my tender skin, and I wonder when I will feel the effect of the painkillers in the bag of fluid dripping into my arm.

I sleep and wake, sleep and wake, and by the second day I feel strong enough to want to move. A tech helps me hobble from the bed to a chair facing the window, bringing with us the hanging bags and the monitor connected to leads on my chest. She settles me, pulls the table close, and telegraphs a smile from kind eyes above her mask.

What a relief it is to sit up in a chair and look out the window at the larger vista of Oakland’s streets and storefronts. Rain caresses the glass, blurring the gray blocks of buildings along MacArthur Boulevard, softening the profiles of distant hills. I watch the rain, imagining what the tiny droplets would feel like touching my face.

The surgery has left me without defenses, without psychic protection. With my skin and heart and eyes I can feel the vibrations of air moving, I flinch at a careless or hurried movement, at voices sounding, metal scraping floor. I feel completely permeable and helpless, gradually realizing I inhabit a reality carved out in me by the huge invasion of surgery and anesthetic. Every tiniest event arrives with stunning clarity as I watch the nurses perform their roles, appreciating their skill and consistency, seeing them as if from a distance—space and silence separating us. I wonder if nurses guess the impact of their interactions with us. Is gentle caring taught in nursing school, in the tech training programs? Or is it just inherent in some people and missing in others?

As the anesthetic gradually leaves my body, I return to a more “normal” state of mind but still am relying on pain-killing drugs for the incision and staples. That night, a surgeon instructs the nurse to remove my nasogastric tube. Leaning close to me, she murmurs behind her mask that this will take only a moment, then she yanks the tube decisively—up, and out! The pain in its expected intensity is well worth it. I am free, and suddenly thrilled.

In the morning, I hear the nurses speaking of the difficult patient in 905. None of this do I remember, but apparently I had loudly complained, insisted that someone help me right now, and made rude comments to the nurse and tech and cleaning person, who all came to calm me down. How intriguing it is to have become the cranky patient, when I work hard in my life to maintain a mellow, calm demeanor, no matter what.

The drugs have unmoored me from my stable location in my identity, leaving me wondering how much of my personality—the stable, pleasant “Sandy”—is performance. I see this as more proof of the truth of the insubstantiality of the self. Anatta has arrived in my room.

A nurse named Ebiti comes in to give me a talking-to about my nighttime tantrum as she checks the monitors in my room. She reminds me of the pandemic, the crisis in health care that it is creating, and the suffering of the COVID patients whose families cannot be here to comfort them. “Tonight,” Ebiti instructs me, “watch the news programs to inform yourself about what’s going on.”

I feel properly reprimanded and instructed, offered a perspective larger than last night’s distress. Before she leaves, she adds “And you will get a walk later” as my reward.

In my continuing vulnerability, I am reminded of how relieving it is to enlarge one’s view, as Ebiti has done for me. I could get caught here once again in the pain of the staples pinching the margins of my wound, the discomfort and frustration of not being able to move freely, the pull of the needle in my arm. So instead, I open to my surroundings in this hospital ward and to the COVID patients.

I hear Ruth’s voice recite the third recollection, “All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.”

The whole expanse of this ninth floor resonates to those words. And I ask my awareness to expand to hold this truth. I open out farther to the buildings of Oakland surrounding us. Seated at the window, I feel a rush of gratitude for the veil of raindrops that blurs my view of MacArthur Boulevard, the people in their cars or hurrying in the rain, everyone busily pursuing accomplishment or pleasure, love or just survival—the natural unfolding of life all around me, the more time that I can now lightly live.

♦

Thanks to Stephen Jenkinson for his exploration of “more time.”

The post Will I Get More Time This Time? appeared first on Tricycle: The Buddhist Review.

I flew to Beijing on January 18, four days before international news outlets began reporting on the coronavirus outbreak, now a global health emergency. Our small group had been planning our big adventure since the summertime, excited to visit a mutual friend of ours who had been studying in China for the last several months.

From Beijing, we went immediately to Harbin, a city in northern China famous for their seasonal ice and snow sculptures. We spent our first few days there cavorting in subzero temperatures, taking silly pictures with giant snowmen and climbing the neon-lit walls of the festival’s life-sized ice castles. We started to hear talk about a virus down in Wuhan—over a thousand miles away—but the people we spoke to were unconcerned. “The virus?” said the day-trip coordinator working at our hotel. “That’s in Wuhan. Not here.” 

Then, on January 22, China took the unprecedented step of sealing off Wuhan, and global news coverage of the coronavirus exploded. Circumstances changed literally overnight. When we woke up on January 23, instead of breezily brushing away the virus talk, the hotel’s front desk person stopped us on our way out to breakfast. “You have to wear these now,” she said, handing us four black face masks. 

We returned to Beijing and then flew to Chengdu as we had planned, now glued to the news. The New Year’s festivities were canceled. The panda base center was closed. We weren’t allowed to visit the nearby mountains; there were police checkpoints, we were told, and no one wanted to drive us, anyway, even for double the price. We spent two days wandering around what felt like a ghost town before changing our flights and going home early, right before American airlines began suspending their US–China routes. 

Even in Beijing and Chengdu, each over 700 miles from Wuhan, and surrounded by an obedient, face mask-wearing public, we had all succumbed to coronavirus anxiety. Was my minor sore throat from all the travel and our go-go-go itinerary, or was it the first signs of the virus? Was my friend’s morning cough from the cold she had a couple weeks ago, or were we all infected? It was worst for my friend currently living in China, whose school at first told her that the spring semester would be postponed by two weeks. Three days later, it had been canceled entirely, and she was faced with the decision of packing up her entire life or waiting out the outbreak isolated in her Beijing apartment. Friends and family were emailing, texting, and reaching out on social media. “Come home.”

And then we did. Our temperatures were checked before we were allowed into the Chengdu airport. During our layover in Shanghai, we filled out forms declaring that we had not been to Wuhan and were symptom-free, and handed them to officials wearing Hazmat suits. Everyone wore masks, including during the entirety of our 14-hour flight to Atlanta. 

Coming into the US, customs agents asked us merely if we had been to Wuhan. (I overheard one asking another passenger if he had visited “Wutang.”) The New York City’s Health Department announced that those who had recently been to China—even to Wuhan—did not need to self-quarantine as long as they were asymptomatic, which we all were. Still, one of my friends quarantined herself in her apartment for days, staying home from work and leaving only for necessities. I myself tried it for two before thinking that self-isolation was a greater danger to my mental health than me being outside was to the general public. I had a terrible case of jetlag, which meant I was compulsively checking my temperature at 3:00 in the morning. It never went over 98.3 degrees, but I kept worrying. 

I’m beginning to see the first noble truth as itself a practice of compassion, an actionable choice—an opening to, a turning toward, a holding of. 

These are the facts. There were almost 6,000 reported coronavirus cases on the day we left China, including 80 in Beijing, the biggest metropolis we had spent time in, according to China’s National Health Commission. In a country of almost 1.5 billion people, that’s around .0004% of an affected population. The percent infected in Beijing at that time was .00037%. At my closest to Wuhan, I was the equivalent distance of New York City to Charleston, South Carolina. I had worn a face mask 100 percent of the time in public—as did virtually everyone we saw—since the 23rd. The odds that I had caught the coronavirus were . . . slim to say the least. 

But it wasn’t just me whose mind had been taken on a ride. I was supposed to celebrate my sister’s birthday shortly after my arrival home, but a close family member refused to see me until the possible 14-day incubation period was over. After I was invited to a Super Bowl party that Sunday, the host called an infectious disease specialist on the down-low about whether it was safe for me to come. (She said it was.) I attended, but left after less than an hour when someone commented that I was irresponsibly exposing them all to a deadly virus. I was informed intermittently by friends and others that the face mask I wore likely didn’t work or that I was stupid for going to a country “like China.”

While those around me worried I might pass them a sickness that I had little chance of having in the first place, 8,000–20,000 people died of influenza in the US. I felt a powerful empathy for those truly suffering from the virus, one sharpened by a shared reality that in all likelihood we didn’t actually share. I had had the barest of contact with the specter of the coronavirus, but could palpably feel the shutting down of people’s hearts around me. There was little concern about my own safety; the worry was expressed about their own skins. What could it be like for the sick in Wuhan and elsewhere? I wished fervently that their experiences have been and will be the opposite of mine—that they would be surrounded by fearless, open, loving care—but I knew this couldn’t possibly be true.

When I was in China, I was amazed to see how quickly an entire country shut down. I suppose it is just that easy, more of a non-action than something being done. Don’t show up at work. Don’t attend school. Don’t go anywhere, don’t do anything. Still, it was astonishing to one day see the hustle and bustle of a normally functioning city, and the next have all that activity cease at once, as if magicked away. 

I am now also amazed at how quickly and easily we can shut down the kindest, most understanding parts of ourselves, when we are scared. That, too, I suppose, is so habitual that it is a kind of non-action, more reflex than choice.   

A day after the awkward Super Bowl fracas, the host called me to apologize. It was a sweet gesture, and appreciated. “It wasn’t personal,” she said. “Unfortunately you just ended up in the middle of it all.”

“If we don’t want to get sick, then we should not be born in samsara,” wrote the Buddhist nun Thubten Chodron in 2006. Getting ill is part and parcel of the Buddha’s first noble truth. We’re all in the middle of it all, all of the time.

I had always considered this truth simply a description of reality, a jumping-off point for practice. Because of X, we do Y. But another understanding of it is as a response mechanism that dilutes the mind of fear and opens our hearts back up when they start to shut down. I’m beginning to see the first noble truth as itself a practice of compassion, an actionable choice—an opening to, a turning toward, a holding of. 

Since I’ve been home, I’ve not necessarily been hiding from news about the coronavirus, but I’ve been reading it like someone trying to get through a chore as quickly as possible. It has been making me anxious to see the number of infected keep jumping daily, the media’s maps of the virus’ spread grow darker red. I understood perfectly the mindset that has led to panic even in the States, and in those immediately around me. How could I not? I was just like them. Opening my heart to those actually bearing the consequences of this outbreak wouldn’t greaten or lessen my chances of bearing them, too. Still, I keep turning away from the front pages and phone alerts, even while I grow increasingly grateful to the people in my life who have welcomed me back from China with solicitude, thoughtfulness, and grace. 

The Buddha knew—disease crops up. There is suffering great and small. We adapt, or we don’t. Threats grow larger or shrink into the rear view mirror. We’re caught in Wuhan, or we aren’t. We catch the coronavirus or something else. We die, or we recover. None of us are immune from this reality. It’s what we do with it that makes the difference. 

The post Disease Is Inevitable. Compassion Is a Choice. appeared first on Tricycle: The Buddhist Review.