How Do I Live Now?

In Lyndsey Medford’s new book, My Body and Other Crumbling Empires: Lessons for Healing in a World that is Sick, she comes to terms with her auto-immune condition, Behçet’s Disease, after it comes roaring out of remission in her mid-twenties. Learning to cooperate with her body would require her to change every aspect of her life–and in the process, to seek a radical reimagining of the world, from a place where sickness is an individual affliction to an interdependent ecosystem where sustainability is a community way of life. Medford draws on her experiences with a genetic chronic illness to illuminate the broader lessons we need to learn in order to heal what ails us individually and communally. 

Whether our burnout stems from illness, systemic racism, poverty, or simply sin’s separation, we’re all in need of hope, and we are called to heal together. Limitations are not the problem, rather our expectations of ourselves and our inability to create and live in healthy, connected systems. The following is an excerpt from the book, which was released on March 7, 2023.

Before my Behçet’s returned, I would have told you God loves everyone, even and especially sick people, and that illness is no one’s fault. As months went by, though, my conviction began to erode. I couldn’t ride my bike anymore; fatigue pressed me to the bed; I came to dread sex as much as I wanted it. I slowly let go of the fantasy that this would all be over in a few weeks and I’d be back to high-intensity interval training in no time. Without a job, a functioning body, or the ability to care for my family, what was God expecting me to do? To some the answer might have been obvious: sick people pray for healing. Certainly, when a symptom grew intolerable, I prayed the flare would abate. I prayed for healing as a child too, but perhaps as much because I was “supposed” to as anything else. I did want to be well; I’d just never been convinced God “gave” me this disease so he could take it away.

While I didn’t pray often for miraculous healing, I did pray I’d be able to do all the things I thought I was supposed to do.

While I didn’t pray often for miraculous healing, I did pray I’d be able to do all the things I thought I was supposed to do. There was a list, a get-to-know-people-and-contribute-to-your-new-community list in my head telling me how to be a Good Person in Charleston. I needed to be volunteering, networking and socializing, getting involved with a church, exploring and learning our new town. These, I knew, were things God would have me do. God doesn’t call people to move to new towns and lay prone on their couches, right? As the question occurred to me, I admitted there was no reason God couldn’t do that . . .

But surely God wouldn’t call me to do such a thing? God knew, you see, that I was special. Teachers had told me I was the star of every classroom and activity from age five on up. I was destined for greatness; this is what you learn in the suburbs, in advanced classes, in marching band leadership training, and especially in an evangelical pew. You learn your life is a “special mission” to bring glory to God, probably by adopting ten children or being the next Billy Graham, or making exorbitant amounts of money and giving a comfortable chunk away.

As I continued asking the same question and avoiding the same answer, it occurred to me that if our achievements are what matter, I, on my couch, was probably bringing less glory to God than my puppy, Miya, who at least brought joy to everyone everywhere she went. I developed a bit of jealousy toward the dog. Was it my new vocation to act as personal assistant to her? Lonely, aimless, and suffering, I’d periodically come to the end of my question-prayers and finally hurl that one at God like an adolescent checkmate: Did you bring me here to Charleston just to rescue this dog? When I heard anything back, it was only this: What if such a thing did bring me pleasure? Would that be so bad? 

I puzzled and raged like some sort of Chronic Illness Grinch. Of course it would be so bad. It was a waste of my enormous potential! And people need to fill our days with more than books. And we need to feel important. And the dog—however delightful she may be—it’s not like she was preventing hunger and homelessness here! All she did was love people unconditionally. And invite them into a spirit of play. And ask us to be in the moment with her. And live with a sense of expectancy that everyone loved her. And greet the mundane with wonder and delight. And what if, what if, what if such things did bring God pleasure?

What if my life story didn’t have to be about the impact I made—but about my own simple, still being?

What if I, by simply existing as myself, made God’s world a better place, like Miya did to mine? What if my life story didn’t have to be about the impact I made—the stuff I do, move, acquire, build—but about my own simple, still being? Could it even be that, by learning to be still, I began to witness the gentle, slow, incremental ways the world reshapes around my still presence to it? Yes! Got it! Stillness. Excellent! My vocation as a sick person must be to master the art of meditation. I would become the very best at stillness. Then, everyone around me would inevitably become stiller and wiser because I was just that good at being still.

Looking back, I didn’t know how to do anything, including have a chronic illness, without trying to achieve perfection at it. I didn’t have an idea what a vocation might be if it wasn’t a calling to be the very best at something. I couldn’t conceive of my own value or the value of stillness if it didn’t change the world and make me famous (or at least well liked). My doctor kept telling me I needed to lower my stress levels. This, of course, sounded positively immoral. What is a modern feminist without busyness; a young, smart college grad without obsessive ambition; an activist without chronic overwork and extreme political anxiety? “No one can completely eliminate stress from their lives,” stress reduction advice counseled, and I nodded my vigorous agreement. I tried to ignore the fact that they meant to say certain stressors are inevitable, which I merely took as an excuse not to deal with my stressors at all. I didn’t know who I was without them.

 The truth is, I needed my stress to prove I was doing my best.

 The truth is, I needed my stress to prove I was doing the best I could. Everyone around me was so stressed, it would feel entitled to presume to exempt myself. Books and websites suggested some ways to manage stress, and I much preferred to add these to my miles-long to-do list than to actually let go of any of my activities, anxieties, expectations, or achievements. But the more months went by, the more I learned about stress, and the more stubbornly my hormone levels loitered in the doldrums. As my doctor explained my lab panels to me, it seemed like every other word she uttered was “stress.” Chronic stress shortens telomeres, the protective structures at the end of a chromosome whose deterioration causes aging. Chronic stress increases blood pressure, suppresses the immune system, and causes inflammation—the core issue from which all my other issues stemmed. The way our society organizes our days and our lives leaves our bodies far too often in fight-or-flight mode. Chemically, we are unable to distinguish between a tiger attack and the low-level panic of an average day commuting, playing for power at work, rushing to meet deadlines, nearly missing a child’s soccer game, checking the bank account and feeling the heart rate spike. We’re flooded with hormones meant to shift our bodies from their normal activities into emergency mode. But emergency mode itself becomes dangerous when we spend all our time there; it interrupts our bodies’ other functions and its chemical by-products overwhelm our systems. Stress wears down the body as thoroughly and predictably as racing wears down a stock car.

 After enough time under this onslaught, my immune system and its haywire hormones responded. Pushed beyond a breaking point and unable to process the situation, it lashed out at the phantom threat unbalancing the body—swinging, missing, and damaging the body itself in the process. The immune system under sustained stress acts like most people do under stress: doing its best under an extreme overload, it actually creates a spiral of destruction.

I was not going to be able to will myself to healing, or heal by being the best at stillness, gritting my teeth the whole way. I was going to have to learn what it meant and how to be myself, alive and with purpose, in this body that felt more and more like the crumbling empire of America itself.

Permission to reprint this material was given by Broadleaf Books.

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