Finding The Others.

I began writing this piece some time ago, but experiences this past week with medical personnel brought me back to it with a renewed sense of purpose. It reminded me how difficult it can be to communicate experiences that fall outside the familiar frameworks of medicine, and how isolating that can feel. So I have returned to what I had written then, finished it, and decided it was time to share it here in this moment.

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Meditation 369

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I began reading Ryan Prior’s The Long Haul quite some time ago. Even then, I recognized something of myself in the people whose stories he tells. I knew that I was not alone. But reading it again today, that knowledge came home to me in a different way.

The book tells the story of people living with Long COVID and other complex, poorly understood illnesses—people whose bodies began doing things that medicine could not readily explain.

It also belongs to a much longer story, one familiar to people living with conditions such as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and other illnesses involving strange and often disabling disturbances of systems we normally never have to think about: breathing, swallowing, heart rate, circulation, energy, temperature, and the countless invisible processes by which the body regulates itself.

Listening today, I kept recognizing experiences from my own life. I have lived with physical experiences that are extraordinarily difficult to explain to another person. At times I have felt the need to swallow and yet been unable simply to swallow on command. The intention is there. The urge is there. But the mechanism seems temporarily unavailable. I have to wait. Then, at some unpredictable moment, swallowing becomes possible again.

There have been experiences with breathing, too—moments when something so fundamental and ordinarily automatic seems no longer entirely automatic. And then there are what I have come to call my adrenergic storms: episodes when the body seems suddenly overtaken by an enormous physiological alarm, as though some ancient emergency system has been activated without my permission.

These are very difficult experiences to describe. They are difficult enough to endure. But there is another suffering that can accompany them: trying to describe something unusual happening inside your own body and discovering that the person sitting across from you has no framework for understanding what you are describing.

What struck me again today was the sheer number of people who have found themselves in some version of this predicament. Millions of people have been living with illnesses and symptoms that medicine has struggled to explain adequately. And because they could not always find the understanding or help they needed from the medical profession, something remarkable began to happen.

They found one another.

They formed Facebook groups and online communities. They compared symptoms. They noticed patterns. They exchanged observations about what made them better and what made them worse. They read scientific papers, learned medical terminology, followed emerging research, and brought what they discovered back to one another.

They became, in a very real sense, citizen scientists. Not because they wished to replace physicians, but because they were sick, because something was happening to them, and because they needed answers.

There is something deeply moving to me about that. And listening to their stories, I began to realize something else. In my own way, I have been doing much the same thing for years.

I have searched. Sometimes I searched contemporary science and medicine. At other times I went much further back, into some of humanity’s most ancient traditions of understanding the body, the breath, consciousness, and the mysterious relationship between them. I was not always searching for an explanation. Often there was no explanation to be found. I was searching for a way to live with what was happening to me.

I found help in yoga. I found it in meditation and contemplative practice. I found it in breath and in learning how profoundly breathing can influence the state of the body. I found it in somatic inquiry—in turning toward physical experience rather than immediately fleeing from it, and learning to listen carefully to what was happening inside me. I learned about relaxation, attention, movement, stillness, surrender, awareness, and the extraordinary relationship between consciousness and physiology.

And slowly, over many years, I developed ways of helping my own nervous system regulate itself.

That may be one of the strangest paradoxes of my experience. The autonomic nervous system is, by definition, supposed to be autonomous. It manages processes that ordinarily do not require our conscious participation. Yet when that autonomy seemed somehow to falter—when my body appeared unable to find its own way back toward equilibrium—I began learning ways to participate consciously in the process of regulation.

I learned how to meet activation without always adding fear to it. I learned how to use breath, attention, movement, meditation, and somatic awareness to help create conditions in which the body might settle. I learned, sometimes painstakingly, how to accompany my own nervous system home.

None of this means that I discovered the cause of what was happening to me. Nor does it mean that these practices could simply make the symptoms disappear. That distinction is important. I was developing ways of managing and responding to experiences whose underlying mechanisms I often did not understand.

But those ways mattered. They gave me something to do when there seemed to be nothing to do. They gave me a relationship with my body other than fear. And perhaps most importantly, they transformed me from the passive recipient of an inexplicable inner storm into a participant in my own regulation.

Looking back now, I realize that this inquiry has been going on for much of my life.

Medicine traditionally places the physician in the position of knowledge and the patient in the position of report: You tell me what you feel, and I will tell you what it means. But what happens when the patient is experiencing something for which medicine does not yet have an adequate map?

When medicine does not yet have an adequate map, the patient’s testimony becomes enormously important. A person may not know the biological mechanism responsible for what is happening inside their body. But they know that it is happening. And when thousands—or millions—of people begin describing overlapping experiences, their collective testimony becomes something that cannot simply be dismissed because the existing medical vocabulary is inadequate.

The absence of an explanation is not the absence of an experience. The absence of a diagnosis is not proof that nothing is happening. And the limits of medical knowledge are not the limits of the human body.

I do not yet know what explains every strange thing my body has done. I do not know whether all of these experiences arise from one mechanism or several. I do not know precisely what role the autonomic nervous system plays in my own story. But I know the experiences themselves. I have lived inside them.

And reading Ryan's book again, I realized that recognizing myself in the stories of others is no longer enough. I need to enter the conversation. I need to find more of these communities and listen to the people who have been living with experiences like mine. I want to learn what they have discovered, what questions they are asking, what language they have found for experiences that so often seem to exist beyond language.

And I need to write my own story.

Perhaps that is one reason The Inner Storm needs to be written.

For much of my life, I have experienced this storm from the inside: the strange surges and interruptions, the moments when ordinarily automatic processes suddenly become noticeable, the body sounding alarms whose meaning I cannot always decipher. But The Inner Storm is not simply the story of what happened to me. It is also the story of the search.

A search through medicine and science, certainly, but also through yoga, meditation, contemplative traditions, somatic inquiry, breath, movement, awareness, and some of humanity’s oldest attempts to understand the mysterious relationship between body and mind.

When the map I needed could not be found in one place, I began assembling one for myself.

Now I want to place my experience alongside the experiences of others—not because our stories are necessarily identical, and not because we necessarily share the same illness, but because there is knowledge in our accumulated testimony. There is knowledge in the patient. There is knowledge in the community. There is knowledge in the millions of human beings who have been forced to become careful observers of their own bodies because no one else had an adequate explanation for what was happening to them.

And perhaps The Inner Storm can become part of that larger conversation.

I understood something very simply. I am not alone. But neither do I want merely to be comforted by that fact. I want to find the others. I want to listen. I want to learn. And I want to add my voice to theirs.

When answers were unavailable, we searched. When we could not understand the storm, we learned to observe it. And when the body could not always find its own way home, we began searching for ways to help it remember the way.

Nigel Lott teaandzen.org

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May the work offered here serve peace, serve healing, serve remembrance, and serve the quiet dignity of being alive. May this sanctuary belong not to one person alone, but to the field of life itself.

And may all who encounter it feel, even for a moment, that nothing is missing and they are not alone.