we are sixty percent

an excerpt from My Body and Other Crumbling Empires

Today’s email is excerpted from My Body and Other Crumbling Empires: Lessons for Healing in a World that is Sick. It’s officially out now!

Sixty percent of U.S. adults live with a chronic illness.

Some of us take a pill and forget our illness altogether. Some of us are totally disabled. Some of us were on the couch today. Some of us should have been, but couldn't afford it.

Some of us have found amazing support from health professionals. Some of us navigate a confusing, unfair, and uncaring healthcare system. Some of us have little access to healthcare at all.

But all of us live with a before and an after. A chronic disease is a constant companion. Even if our condition is well-managed, some part of us knows that fragility and uncertainty have taken up permanent residence in our lives. We have all known what it is to be deeply grateful to a body, and to wish for a different body, and maybe to do both on the same day.

We experience, not only our own lives, but also the rest of the world differently than we did before. We wonder how much to reveal to our coworkers, families, or friends. We take health and healthcare personally. We have a different relationship with words like “need” and “dependency.” We hear people declare confidently how to "be healthy" and we wonder what people like them think of people like us.

We are sixty percent, but too many of us feel alone.

Having a chronic illness—like any suffering in this culture, really—feels isolating and scary. Sick people end up feeling self-conscious.  We're told we're unusual, or failures; it seems like a downer, or an embarrassment, or a weakness we should never show. We wonder if we’re “complaining” too much when we’re honest about our lives; we fear being stigmatized and stereotyped; we might accidentally make others uncomfortable if we joked about bodies and doctors. 

But the truth is, we are sixty percent. More of us live with these realities than don’t.

Five years ago, at the age of 26, my childhood rare, chronic autoimmune disease—Behcet’s Syndrome—suddenly overtook my life again. I remembered that I am one of the sixty percent. At first, I thought the biggest long-term effect on my life might be adding more doctor’s appointments to my agenda. Then I kept not getting better.

I’ve decided to spare you the suspense: “healing” may be in the title of this book, but my illness is not gone. It’s still chronic. I might even venture to say it’s a part of who I am. I know how to manage pretty well, but that doesn't mean I'm healed. Five years later, I'm ok with that.

Because even though I don't have certainty about how to navigate within so many limitations, I am certain my body and my life are good.

I believe we, the limited, matter, and we belong.

I believe we, the fragile, can show a culture of bravado how to live with finitude.

I believe we, the delicate, contribute something to the world just by being right here, on our couches. Again.

I believe we are canaries in the coal mine of a breaking earth, and our embodied existence, our boundaried lives, our networks of care offer prophetic presence to the world.

Over and over, my body with its disease has drawn me together with others. My illness is usually invisible; but since I started sharing about it with others instead of hiding, I’ve discovered I’m surrounded by people who also live with invisible physical or mental illness. For every person who makes it clear they do not want to engage, there’s someone else who finds comfort and connection in sharing their own hidden experiences.

When we connect with each other, we can remind each other of the truth: we have all learned something about ourselves and the world from our bodies or our experiences. What we need matters, and who we are matters, and we deserve to be honored, cared for, and listened to, and to know we are never alone.

I am no longer a person who can chart a direct path to a goal and will my way to meet it. I am a dropout from every competition I once tried to win: the race to the top of the career ladder, the unending, unwinnable beauty contest, and even the secret dream of being known as a really, really good person—the best person, maybe. I don’t have the energy to win any of those games; even when I thought I did, I didn’t. I live week to week and day to day with such uncertainty about what my capacity will be, I don’t have the luxury of making grand plans and strategizing my way to an ambitious deadline. My planner has great faith in me, but I can’t follow its hand-lettered instructions to simply “make it happen.”

This is not to say that I never again want to be successful, feel beautiful, or do good. It’s just that the ways I was taught to define and achieve those things no longer make sense in the world as I know it. Ever since they stuck a planner in my hand on the first day of second grade, I’d learned to choose and chase external goals—all the skills of ordering my world so that my efforts would add up to the correct final sum (92 or higher, to be exact). 

The thing is, I no longer order my own world. The thing is, I never did.

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Since the pandemic began, we’re acutely aware that our lives balance at the intersections of forces well beyond our control—natural ones like disease, human-made ones like the vast scientific infrastructure that produces vaccines, even cultural systems like ideas about science, freedom, and democracy. These systems’ vastness and their intricacy embody so many of life’s paradoxes: they’re simple but also complicated, resilient but also fragile, subject to laws and patterns but also unpredictable, wondrous but also terrifying.

Much of what we talk about when we talk about “social justice” depends upon a working understanding of systems like these and a willingness to recognize that context matters. Individual acts of service or charity could mitigate some of our world’s problems, but justice means recognizing when the problems are being caused by our own collective choices about how to interact with and organize the world. Individuals who overcome obstacles can be inspiring, but justice means striving for a world where we don’t put unnecessary obstacles in each other’s way. Individual effort is laudable, but justice is when an imbalance of power or privilege doesn’t cost anyone ten times the effort to achieve something. 

Structural imbalances—ones we must work together on a society-wide level to address—are not only unjust, they’re increasingly difficult to ignore. Many systems we’ve taken for granted are headed towards collapse. Many people who’ve long been oppressed are now in full-blown crisis. 

We know that each of us plays a tiny, tiny part of our own in all these systems, but they seem too big, too old, too powerful, too far removed, or too hard to understand to participate meaningfully in them. Sometimes, the more we learn, the smaller we feel.

This is a fantastic place to be. After centuries of creating and interfering with these ever-more-complex systems, by rights humanity should be humbled and awed. Instead, people in power act with hubris that would be laughable if it wasn’t so destructive. Feeling helpless or giving away our power isn’t good—but smallness also isn’t inherently bad. Those of us with a little perspective on our place in this world might have more clarity than some who’ve grown too comfortable wielding the levers of power.

As I came to know my immune system less as something I could ever hope to  control, but more as something I participate in, I began interacting with that system with more care, respect, and intention. I had to begin that long (and ongoing) process well before I felt ready, knew where all the resources would come from, or even had any clue that it would “work.” 

Meanwhile I was learning all I could about race and racism, economics and climate change, community, church, and social change, while I spent two years in the South Carolina Poor People’s Campaign and met other activists around my city and around the country. Under the mentorship of others committed to actively pursuing justice over the long haul, I found myself bringing the same habits of respect and intention to my interactions with social, economic, political, and environmental systems that I did to my own immune system. I could never control or even fully understand any of them; but I could fundamentally alter how I played my part in them, and help shift them from places of destruction to places of healing.

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When I began to recognize how I’d burned out my own body, I couldn’t help but notice how many of the lost connections and skewed relationships within myself mirrored illnesses and imbalances in the wider world. Often the changes I needed to make for my own health also led me to healthier, humbler, more holistic attention to broader systems within which my body and life are enmeshed. At each halting step of incremental healing, I found this baffling, invisible immune system was calling me more fully into my own humanity, but also into a relationship of greater Wholeness, justice, and peace with the world: with my physical body and with the healthcare, economic, social, and food systems, in particular.

This book tells the story of how I am finding my own way to my own kind of healing, but it’s not a book of step-by-step instructions for how to heal our bodies or fix injustice. Instead, I want to ask us to reconsider how we relate to our bodies and selves, communities and cultures, systems and ecosystems, from our internal dialogues to our neighborhoods to the global industries in which we work. If we’re going to unlearn burnout, we have to let go of the myth of an empire-wide solution to be handed down by experts or politicians. We must reclaim our own power, and that given to us by the Holy Spirit, to uncover even the tiniest piece of the puzzle, or pick up a small corner of the load. We must re-learn to see and honor the wisdom, needs, and resources already present within every person, group, or place.

This is the kind of change that constantly asks us to question, to listen, to notice where our world is begging to heal itself—rather than to be fixed by our clever solutions. This transformation will draw us into faithful action and sacred relationship within ourselves, with God, our homes, and our communities first, until we slowly realize that together we’ve grown templates for offering the same things to the world on a much larger scale. adrienne maree brown reminds us that this model of transformation and growth already lives within us:

When we speak of systemic change, we need to be fractal. Fractals—a way to speak of the patterns we see—move from the micro to macro level. The same spirals on sea shells can be found in the shape of galaxies. We must create patterns that cycle upwards. We are microsystems…Our friendships and relationships are systems. Our communities are systems. Let us practice upwards.

This is a book about practicing upwards. But first, it is a story about burrowing downwards—deep into my cells and my soul.

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Thanks for coming on this journey with me! Here again are those links to buy the book and claim your bonuses.

peace, love, bread, and wine,
Lyndsey