Don’t-Know Mind

In July 2021, Sharon Lukert was sitting in her backyard when a friend arrived carrying a batch of morning glories for her garden. When Lukert cried out, “Oh, the marigolds are here,” her friend looked at her with concern. As Lukert attempted to point out different vegetables she had planted, she continued to call each a marigold. “The tomatoes, lettuce, carrots—no matter what I was trying to describe, ‘marigolds’ came out of my mouth,” she remembers. In that moment she and her friend both knew that something was wrong.

This was more than just a slip of the tongue—it was a tipping point that led Lukert to seek medical attention. After months of missed appointments and difficulty keeping up with conversation, the “marigold moment” led her to realize that there was something going on with her memory beyond the normal cognitive changes of aging. She underwent cognitive testing and ultimately received a formal diagnosis of mild cognitive impairment, or MCI. Though MCI can develop for a number of reasons, in her case it is most likely due to Alzheimer’s disease.

Lukert is one of at least 5 million Americans who have been diagnosed with MCI due to Alzheimer’s. Yet she was surprised to find that there are very few resources specifically on MCI—and even fewer personal accounts of the early stages of cognitive decline. She told Tricycle, “I found some personal stories about people who had moderate to severe dementia, but none on mild cognitive impairment in its early stages, so I realized there was this gap.”

Her new book, Until My Memory Fails Me: Mindfulness Practices for Cultivating Resilience and Self-Compassion in the Face of Cognitive Decline, is an attempt to fill that gap—to provide a firsthand account of living with MCI and, in the process, offer a compassionate guide for others facing similar diagnoses. Weaving together her own experience of cognitive impairment, the lessons she has learned from decades of Tibetan Buddhist practice, and stories of her “dementia ancestors,” or the hundreds of patients she cared for as a nurse and hospice chaplain, the book lays out concrete practices for navigating cognitive changes with courage, acceptance, and dignity.

As a chaplain and caregiver, Lukert has witnessed the spiritual and emotional challenges that come with any major life change—as well as the transformative potential such changes can offer. When she was first diagnosed, she was determined to integrate the process of cognitive decline into her lifelong path of spiritual growth, treating MCI as an opportunity to continue to open her heart and mind. In this vein she describes MCI as a bardo state, falling somewhere between the normal cognitive changes that come with aging and the more severe cognitive decline of dementia. She first became familiar with the Tibetan bardo teachings while working as a hospice chaplain, where she accompanied patients and families through the dying process. This experience taught her to apply the concept of bardo to the small transitions of daily life we typically don’t notice, like endings and goodbyes, as well as unexpected beginnings. Now, she has been practicing with the bardos of cognitive decline, pausing and attending to each change and loss that MCI brings. As she writes in Until My Memory Fails Me, “If we can become aware of and comfortable with the daily bardos, it can help us prepare for the larger transitions, such as a personal crisis, a new diagnosis, and even death.”

There is no stable sense of acceptance, no static end point.

Paying attention to these transitions has taught Lukert how unpredictable and nonlinear the trajectory of cognitive impairment can be. She compares it to a “slow slog through brambles in the darkness of a moonless night, then stepping into an open flowering field of sunshine, all leading slowly down a gradual path into the valley of dementia.” Some of the symptoms she’s experienced recently include forgetting appointments, shifts in her perception of time and space, difficulty with finding words, trouble keeping up with conversations, losing things, struggling with math, forgetting faces and locations, decreased energy, and difficulty with distraction. “Each time a symptom arises—a loved one’s name forgotten, a familiar route suddenly alien—groundlessness occurs,” she writes.

Lukert notes that in a Buddhist context, groundlessness can be seen as a positive outcome, and many Tibetan Buddhist practices are framed as exercises in groundlessness, offering practitioners a chance to rest in the open spaciousness of the mind. Yet it can be challenging to apply these practices when she is actively experiencing a new symptom and facing a much more immediate sense of disorientation. In these moments, she tries to remember the Zen teaching of “don’t-know mind.” “Resting in a state of not knowing means letting go of concepts and thoughts altogether and being open to whatever you are experiencing in that moment with curiosity,” she reflects. “When I can remember this during a state of confusion or disorientation, I may still be confused, but I can relax with it. Then there is a little space to allow the confusion to just be and for me to allow that sense of groundlessness without being swallowed whole by it.”

Adopting an attitude of not-knowing has helped her to manage her expectations and approach new symptoms with gentleness and acceptance—though this acceptance fluctuates day to day. Lukert is familiar with the fleeting nature of acceptance from her work in end-of-life care: As a hospice chaplain, she accompanied patients as they grappled with Elisabeth Kübler-Ross’s stages of grief, struggling to reach a stable sense of peace. “What I learned at the bedside was that the emotional process of dying was shaped more like the tides, in constant motion, rather than a straight line,” Lukert writes. “There was no specific end point where someone could reach the precipice of acceptance and remain there till their last breath.”

The same is true with MCI: There is no stable sense of acceptance, no static end point. Yet Lukert believes that it is still valuable to cultivate a level of acceptance of the inevitable change and uncertainty that come with MCI. She writes, “When I can at least accept with a little grace that forgetfulness is a new part of who I am, then I can still be happy and kind to myself and others, even when I may not get things done or remember things as well as I believe I used to.”

According to Lukert, one of the biggest obstacles to acceptance that people with MCI face is the stigma surrounding cognitive decline. “People tend to push those with dementia out of society,” she told Tricycle. “I’ve talked to so many people who say, ‘I’m not afraid of dying, but I’m terrified of getting dementia.’ It’s the sense of lack of control, the fear of becoming someone you’re not and losing your identity.” Lukert has experienced this stigma firsthand—like when doctors speak to her husband rather than to her, assuming that she doesn’t have the capacity to understand. She points out that stigma around neurodegenerative disease dates back centuries, and cognitive decline has been variously attributed to an individual’s weak will, punishment from God, a sign of witchcraft, or, more recently, a form of insanity. (In the Middle Ages, many people with dementia were burned at the stake; up into the 1950s, many were committed to mental institutions.) While there has been much progress in dementia research in recent decades, stigma and misinformation persist, and many hold unconscious biases around cognitive decline. Lukert says that much of her internal work has involved becoming aware of her own biases and working to mitigate them—and then talking openly about her experience as a way of normalizing MCI. “The more we can talk about it, the more it can be seen as a part of life,” she says.

Buddha-nature can’t be altered or erased by cognitive decline.

Lukert hopes to counter this stigma by demonstrating that it is still possible to live a meaningful and fulfilling life with MCI. Part of this emphasis on quality of life came in response to a pattern she noticed in the literature on cognitive decline: When she first started reading articles about MCI, she found that they tended not to mention happiness or joy. She set out to remedy this by highlighting the joy that can still be possible amidst cognitive decline, living with the open question: Where’s the joy? “Finding joy in small moments of beauty and grace in my day-to-day life is what helps sustain me and is the foundation for maintaining my sense of compassion, openness, and connection with others,” she writes. “Enjoying the seemingly mundane moments by paying attention to details, such as the smell of freshly brewed coffee or the mottled sunlight sifting through the branches, means happiness is at my fingertips anytime I look up and out at the world around me.”

She cites one of her teachers, Dzigar Kongtrul Rinpoche, as an inspiration in this respect, as he emphasizes that we can be happy “for no reason.” She has witnessed such moments of joy in watching a woman with severe dementia light up upon hearing a familiar voice, or meeting a man who could still play the keyboard even when he could no longer feed himself. “These precious, intimate moments have proven to me that we don’t lose our basic nature and that magic can still happen even while living with dementia,” she writes.

Recognizing that this basic nature persists even as memory fades has been crucial to Lukert’s Buddhist pratice as well. Early in her diagnosis, she sought guidance from one of her teachers, Pema Chödrön, on how MCI would impact her ability to practice. “I wanted to know what would happen when I can’t do the formal practices anymore,” she says. “What happens to my midstream?” In response, Pema asked her a question she still holds: Where is the mind?

Freeing the mind from the physical confines of the brain helped Lukert to realize what she sees as a fundamental truth: Buddha-nature can’t be altered or erased by cognitive decline. “Our buddha-nature is beyond anything that can happen to us physically,” she told Tricycle. “What’s happening to my brain is physical, so even when I lose the ability to practice, it doesn’t necessarily erase the practices I’ve done or the perspective I’ve developed.”

This realization strengthened her commitment to meditation—and to demonstrating that a life of meaning and purpose is still possible with MCI. “I hope to break through the stigma and bias and give people tools that might help them build resilience as they go through the process of cognitive decline,” she says. “There isn’t a cure at this point, so learning to live the best life that we can is what we can do.”