Awake and Demented

Dementia. “What’s that word?” my mother asked my sister the other day, when the nurse accidentally left her chart in plain sight.

“Oh, that’s the name of the doctor,” my sister said. “Doctor Dementia.”’

Whew, another quick save—maybe. My mother never did like the hard facts straight up, and ever since we received her diagnosis three years ago, we’ve had to practice the spur-of-the moment dodge, the ingenious distraction, the white lie….

Dementia: it takes a blizzard of white lies to soften the hard edges of that ugly word. To me, it’s as ugly as cancer—no, uglier. If I play the harrowing game I played as a child, which-would-you-rather?, then I would a thousand times rather have cancer than dementia. For the deep-down conviction, deluded or not, is that I could still be me if I had cancer, even a rapidly advancing fatal cancer—so long as it didn’t produce dementia. Isn’t this the horror of dementia, the way it subsumes identity, devours the who of who I am?

“What will happen if I forget myself?” my mother asked the other day.

Her words cut through us like a knife, yet we were grateful for the flash of clarity—for the moment in which the self was aware of its rapidly dwindling capacity to be aware. Dogen says, “To forget the self is to be enlightened by all things,” but he wasn’t talking about the self-forgetfulness of dementia. He was thinking about the self-forgetfulness of enlightenment. How different are they?

Utterly different.

And yet—

If, as they say in Zen, the rain falls equally on all things, the master’s golden staff is gold everywhere you break it, and outside the temple gate a dog is pissing to the skies….

Then doesn’t it follow that the bodhi mind—the awakened mind—is bright and vast enough to encompass the fog, despair, and disruption of dementia?

But what does this really mean? And what am I really asking?

These are not idle questions, because the hard truth is that if dementia hasn’t already touched your life, it could—sooner than you think. Before you know it, someone you love—or, yes, you yourself—may be holding a passport to this strange new land you never wanted to travel to. It’s the Land of Non Sequitur, a kind of science-fiction realm or Lewis Carroll dream where things don’t follow in an orderly way. Because the mind has lost its ability to create a coherent pattern of experience, it’s a place where shapes shift and numbers swirl, a place of tangled thoughts and dangling sentences, of lost keys, lost cars, mounting piles of unpaid bills, and aimless wanderings through once-familiar streets.

And then it’s not enough to spout beautiful ideas about the vastness of the bodhi mind, the goldness of the golden stick, one has to know what to do.

But how can you know what to do in the place where knowing disintegrates? Doesn’t the question itself shatter logic?

If you live where earthquakes, tornados, or hurricanes strike, then you have to prepare for the type of disaster that belongs to your realm. And if you live in the realm of hurricanes, you need to have special windows. Strangely, in wrestling with my painful questions about dementia, I’ve come to take solace in the remarkable design of the hurricane window.

What’s remarkable about hurricane windows is that they simultaneously ward off and welcome in the huge and destructive power of water and wind. They do so by providing two layers of glass, separated by several inches of air space. The inside layer is made of extra heavy glass and is sealed on all sides, like an ordinary window. The outside layer, directly facing the elements, has a gap below. This gap lets the whooshing water enter and release some force within the air space, so that the inside layer won’t shatter.

This double layer, it seems to me, is crucial in preparing for the disaster of dementia.

Doesn’t it follow that the awakened mind is bright and vast enough to encompass the fog, despair, and disruption of dementia?

First, you need the strong inside layer of glass, the one that wards the danger off. How does one acquire it? While there is clearly a genetic link for some forms of dementia, such as Alzheimer’s, I’ve found comfort in learning that there are quite a few simple and practical ways to help preserve the brain’s optimum functioning. The list of tips is constantly being revised, but there are a few that hold their place on the short list—and they appear in the “7 Tips for Keeping Your Brain Healthy” section below.

It’s the outside layer of protection, the one that simultaneously wards off and invites, that’s more difficult to envision. How can we make a space for dementia, as the hurricane window makes a space for the whooshing chaos of water and wind?

When I pose this question, what first presents itself is: mindfulness. For what is mindfulness, if not the practice of bringing the mind to those places where it goes missing? Again and again, we wake ourselves up at the point where drowsiness, distractions, and daydreams arise. In doing so, we are indeed making a kind of space for the chaos of obsessive thoughts, the fears, desires, and old hurts that swirl within even the most “normal” mind. Can this practice provide any kind of protection against the mind’s disintegration?

Already there is compelling evidence that the regular practice of meditation can ease the early symptoms of dementia. At last year’s International Conference on the Prevention of Dementia, which was sponsored by the Alzheimer’s Association and held in Washington, D.C., the results from a University of Pennsylvania study were presented. For twelve minutes a day over eight weeks, twenty patients who were all suffering from some form of memory loss and who ranged in age from 52 to 70 had been instructed to practice kirtan, a form of yogic meditation that involves chanting and finger movements to focus the mind. Follow-up testing confirmed significant improvements in memory, and brain scans revealed a dramatic increase in blood flow to the precise area of the brain that is associated with learning and memory—the area that is the first to decline with Alzheimer’s. According to University of Pennsylvania’s Andrew Newberg, M.D., who conducted the study, “For the first time, we are seeing scientific evidence that meditation enables the brain to actually strengthen itself and battle the processes working to weaken it.”

If a basic concentration practice such as kirtan can provide such clear benefits, what other forms of meditation might help to strengthen the brain against the onslaught of dementia? In asking this question, I feel as though I’ve set out for a vast and still-virgin territory. Though years of diligent research will be required to produce an adequate map, it seems reasonable to explore those practices that intensify the flame of attention, carrying the thread of consciousness deeper and deeper in to dimmer and more inchoate states. In this context, along with various forms of awareness practice, researchers might find it relevant to investigate such diverse phenomena as lucid dreaming, in which one trains the mind to observe itself even as one sleeps. And what of the various stories about famous gurus who managed to keep their minds calm and stable while under the influence of powerful psychotropic drugs? At the very least, these stories point to a far horizon, encouraging us to think with great expansiveness about the mind’s inherent resilience.

As I conjure this far horizon, my own mind is seized by the juxtaposition of two dizzying questions:

Is the awakened mind one and the same with the conscious mind? And if so, is that consciousness dependent upon the health of the individual brain? Traditionally in Buddhism, it is considered extremely fortunate to be born in human form, because the unique intelligence of human beings—along with the suffering of human life—places us in the best possible condition from which to attain enlightenment. Conversely, if our human intelligence is assaulted by illness or injury, then it’s as if we’ve moved into another realm of existence—something perhaps closer to an animal realm. From this relative point of view, dementia is clearly an unfortunate demotion, a downgrade to a less auspicious rung.

And yet there is another question: Is the awakened mind more accurately defined as a state of egolessness that transcends the conditions of any one individual’s brain? This is the absolute point of view, the one that lies within the koan: “Does a dog have Buddha-nature?”

These two questions are absolutely fundamental to understanding how the path-seeking mind meets the challenge of dementia—and they provide another way of describing the hurricane window. From a relative point of view, we need to do everything we can to stay as clearly conscious for as long as we can: this is the sealed-up inside layer. From an absolute point of view, we need to surrender identification with the particular form that our own consciousness takes: this is the outer layer that lets the water in.

At death, all of us must surrender to the unknown as we face the dissolution of our own familiar states of consciousness. For those with dementia, this dissolution happens earlier. Perceptions are scrambled, the sense of time is fundamentally altered, and—perhaps most radical of all—personal history gradually disappears, until the afflicted no longer remember their own names. Because the greatest hindrance to such surrender is fear, we can turn to practices that encourage us to widen the field of our identification, to dissolve into the vastness of space without fear.

In her book The Majesty of Your Loving [see excerpt below], Olivia Ames Hoblitzelle recommends “Clear Light Meditation,” a practice that, in her words, is designed to cultivate “a state of peace and acceptance, no matter what is happening.” As her husband entered the final stages of Alzheimer’s, she would sit beside him, encouraging him to visualize “a vast, boundless, ocean of light” as she calmly repeated certain phrases: “There is light everywhere…clear, radiant light… / There is light above…there is light below… / Letting go into the light… / Breathing into the light… / Everywhere light….”

This very accessible practice comes via the Clear Light Society, which was founded in Massachusetts in the 1970s. In its roots, however, it derives from certain ancient and complex Tibetan Buddhist practices, whose goal is to help one prepare for the altered states of consciousness that follow death. In The Tibetan Book of the Dead, the guiding principle is that—while one is still conscious, in a familiar way and in a familiar realm—one learns strategies for navigating one’s mind through radically unfamiliar waters. Moving through the bardos, or intermediary zones, of “becoming,” one vividly imagines a spectrum of possible experiences—whether a state of terrible fear or a paralyzing attachment to physical form—thus imaginatively rehearsing for one’s actual transformation, from one life, through death, to the next birth.

In my own life, I’ve vowed to explore this bardo practice further, as a way of dealing with my own fear of dementia by training the mind to move, with equanimity, through frightening and unfamiliar states. It also seems wise to return, once again, to a simpler and less esoteric approach: kindness practice.

In a dharma talk, I once heard a meditation teacher recount a story about a longtime family friend who was suffering from dementia. Before his illness, this friend had been a highly intelligent and successful man, and he had always been very kind. When the teacher and her husband arrived for a visit, he threw open the door and exclaimed: “I have no idea who you are, but do come in and make yourselves at home!”

Both literally and metaphorically, this story is about opening the door to the unknown with a trusting and welcoming heart. To train oneself to act in this way, it would seem that no elaborate practice is required beyond the practice of kindness. Paranoia is a common feature of dementia, for as people become increasingly helpless in a world that is increasingly chaotic, they are prone to believing that others are causing their distress, whether stealing their possessions, causing their food to taste bad, or making their clocks and calendars go out of sync. If an established practice of kindness can make us more resistant to paranoia, this in itself would be a powerful balm.

Whether or not the practice of kindness makes it easier to face the demons of dementia for oneself, it certainly makes life easier for others. In his latest book, The Wise Heart, Jack Kornfield tells a story about an elderly Tibetan monk who was visiting Spirit Rock, the meditation center of which Jack is director. The rinpoche was obviously disoriented and suffering from significant short-term memory loss but as he wandered about the grounds looking for his room, people delighted in the great warmth and deep calm of his presence.

If I look within my own small circle, I see other versions of this story. Within the last two years, the husbands of two of my closest friends have been diagnosed with early-onset Alzheimer’s. Both men are in their early fifties, and both of them spent most of their adult lives devoted to spiritual practice. Though the situation has been enormously painful and difficult for all concerned, their wives report that they have remained very kind. Such kindness does help to ease the daunting task of caregiving—and it could very well have medical consequences. As anyone who has spent any length of time in a medical facility can attest, when patients are cantankerous, a negative spiral can result. Friends and family become less eager to visit, the medical staff begins to recoil—and the patient is left vulnerable and isolated.

In essence, both the bardo practice and the cultivation of kindness evoke the neuroscientific notion of the greased neural pathway. Whether speaking Spanish or playing squash, when we acquire a new skill, we forge new neural connections in the brain. Initially these connections are tentative and easily disrupted, but as they become firmly established through repetition—“greased”—a once laborious process becomes more effortless and requires less conscious control. If we cultivate a certain mental habit over and over, it is more likely to become automatic, to activate when we need it most—as when, for example, we are facing the bardo of dementia.

With this cluster of practices, I’ve gone as far as I currently can with my hurricane window. And actually just now, as I wrote those words, the phone rang. It was my friend Anne, whose husband, Jake, was diagnosed last year with early-onset Alzheimer’s. Because of the stigma of Alzheimer’s, they ask that I not use their real names, but here’s how our conversation went: Anne was calling from the beautiful old cemetery in upstate New York near where they live. She sounded breathless on the phone. “We just had to call you, Noelle! This morning we went out for a Spanish omelet and now we’re hiking through the cemetery!” In her voice I heard both exuberance and relief: their day was unfolding in such a natural way, with one happy activity following the next. This was in marked contrast, I knew, to the many days where they both felt overwhelmed by the question “What is Jake going to do today?” For how do you organize a day when your mind itself is succumbing to entropy? Then Jake got on the phone, and I heard his familiar voice say my name. “Jake! How are you?” There was a pause, and the words came out both labored and ecstatic. “It’s just—” There was another pause. “It’s just unbelievable here! Unbelievably beautiful!”

Listening to him, I remembered that the word “savor” is linked to the Latin verb sapere, to know. It’s a link I’ve always loved, and it’s comforting now to realize that, even as our brains may lose much of their ability to think in an organized fashion, we may still be capable of the wisdom of savoring. Indeed, for my family this has been one of the great and unexpected blessings of my mother’s affliction. No longer able to engage in anxious planning for the future or rumination about the past, there’s a serenity about her that we rarely saw before. She loves to look at trees, birds, clouds moving across the sky. Though her predicament has plunged my family into a morass of stressful medical, logistical, and financial concerns, the truth is that after visiting her I often come away feeling refreshed.

To paraphrase Shantideva: If you can solve your problem, do so. If not, then what is the use of worrying?

What more can we do except commit to keeping our bodies healthy and being as fearlessly aware of our own minds as we can in each moment?

As the Zen koan goes: How does the wooden Buddha walk through fire? And though I’ve switched from hurricanes to flames, the koan belongs here. For the answer is: He burns, wholly. Not just his body, but his brain too. For this is who and what we are: constellations of matter, vulnerable, impermanent, and—for moments? for lifetimes?—illumined by the miracle of awareness. Whether fleeting or eternal, it’s a miracle that we must never take for granted.

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LOVE ACROSS THE LANDS

An excerpt from by Olivia Ames Hoblitzelle’s The Majesty of Your Loving: A Couple’s Journey Through Alzheimer’s

Olivia Ames Hoblitzelle is a writer, therapist and dharma teacher who has done groundbreaking work in bringing together Western and Eastern approaches to mind/body healing. Her husband, Harrison Hoblitzelle (“Hob”), was a dharma teacher ordained by Thich Nhat Hanh when he was diagnosed with Alzheimer’s in his early seventies. Her book is a deeply honest and moving account of their attempt to face the reality of his illness with as much open-hearted awareness as was humanly possible.

We live, unwittingly, in a world of assumptions: that people will make sense; that they will do certain things; that we agree about time and place; that we can understand and be understood. But when all that unravels, where are we? My answer for Hob and me would be that we lived in an open, shifting, spacious reality where everything was undefined and totally unpredictable. “Isn’t that the way reality is anyway?” you ask.

No, this felt quite different. This was a totally new experience. When I was rested and in balance, it was compelling – even exciting—because it was so alive and immediate, a perpetual wake-up call to live wholeheartedly in the moment. Meanwhile, it came to me as a revelation that amidst all the losses, the essence of this man I loved was still very much present. Sometimes my own preoccupations obscured my seeing, but astonishingly there he would be—the wholeness of his spirit shining through—his acuity, his sensitivity, his playfulness and humor all intact. For example, there was a moment after he’d been entangled in some simple, practical task when, out of his confusion, he quoted something from his literary repertoire.

“There are things in heaven and earth, Polonius, that are undreamt of in your philosophy.” And then he added, “And if I laugh at any mortal thing, ’tis that I may not weep.”

These two phrases, both of which he had quoted periodically over the last few years, expressed the heart of what he was experiencing. I thought it amazing that he could so graphically describe the trials of losing his ability to communicate.

“The words get stuck,” he declared. “I’ve got this galloping brain drain. I know what I want to say, but the word horde is locked up. It’s like a corral filled with horses, all pushing against each other to get out, but they can’t find the gate. Now that’s a good image!” he said with a laugh.

Without doubt, the humor that Hob brought to his situation was a gift, yet the nature of the disease had us both ricocheting between extremes—from laughter to fear. How could I answer him when he asked: “Can you come back from this strange land from which most don’t return because the words are gone?”

Hearing the edge of anxiety in his voice, I certainly didn’t want to add to it. I didn’t want to say, “No, you don’t come back from that strange land.” Indeed, what was it like to live in that strange land? He knew that land, because sometimes he was there and could speak about it. But what about the feelings of loss and desolation, the dissolving memories, the blanks, the disconnections?

“I don’t know,” I finally answered, as I moved toward him and maneuvered myself into an awkward, kneeling hug as he continued to sit in his green chair. We held each other for a long time, both silent.

♦

From The Majesty of Your Loving: A Couple’s Journey Through Alzheimer’s, © 2008 by Olivia Ames Hoblitzelle. Reprinted with permission of Green Mountain Books.

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7 TIPS FOR KEEPING YOUR BRAIN HEALTHY

1) What’s good for the heart is good for the brain. Get regular aerobic exercise and avoid high blood pressure and high (bad) cholesterol.

2) Stay mentally active, regularly presenting yourself with new challenges—whether they come in the form of a foreign language, a musical instrument, a dance or computer class, or a complex game or puzzle.

3) Maintain a daily meditation practice to help relieve stress and reduce anxiety, while activating the memory and learning center of the brain.

4) Stave off depression.

5) Stay socially engaged.

6) Practice good nutrition. Avoid “bad” fats. Be moderate in your alcohol consumption. There is evidence that a daily Omega-3 supplement, a low-dose aspirin, a pinch of cinnamon and tumeric and a blast of the polyphenols (antioxidants) found in fruit or vegetable juice may provide some degree of protection.

7) Stay tuned to new developments. A great deal of research is being done in this field, and soon it may be possible to take certain simple tests to gauge one’s risk of some common forms of dementia—and take appropriate preventive action (such as taking certain medicines) before the brain has sustained significant damage. The latest findings in neuroscience suggest that the brain remains far more plastic than has ever been imagined. Even late in life and in the wake of serious injury and illness, it can forge new neurons and new neural connections—and this is cause for hope.