When (not if) Our Bodies Crumble

a personal note about our life lately, and a brand new bright spot of hope for all who are weary

As a public-facing person, there are stories I tell, stories I keep, and sometimes, stories that have stretched for so long through my life, I lose track of what’s been told, what should be kept, and why.

One such story is this: four houses ago, Calvin woke up on a Sunday morning with a bloody nose. He wasn’t quite two, and this wasn’t exactly uncommon. We spent the next hour calmly trying to stop the bleeding. Eventually, I called my mom (a nurse) and she calmly suggested we take him to the ER to have a blood vessel cauterized. Soon after we made arrangements for Ruby River (an infant!) and buckled Calvin into his car seat, the bleeding stopped. We circled back home and chalked it up to a weird start to the day, completely inconsequential.

Later that day, I noticed tiny bruises covering his tiny body.

I panicked enough to call a friend who worked at our pediatrician’s office and she told us to come in first thing Monday morning. After an office visit and lab work, my panic doubled when my flip phone rang just an hour later and it was the actual doctor’s voice on the line, telling me to pack up immediately and head to the children’s hospital in Indianapolis.

Something was wrong with our baby. Very wrong. I recognized the panic I was holding at bay in that doctor’s voice, so we drove.

It was a week filled with painful procedures and exploratory surgeries that were scheduled and rescheduled because his platelet count was too critically low to risk even a small incision. It was a week without answers.

The nurses fell in love with him, of course. No one understood how a child so small was already talking and even seemed to understand some of what was going on. He feasted on macaroni and cheese, peas, and applesauce - already a foodie - from the confines of a caged baby crib. Eventually, they found ways to stabilize him and sent us home.

After a few more days, our local pediatric hematologist/oncologist stumbled on a possible diagnoses: Autoimmune Lymphoproliferative Syndrome. ALPS for short. And that is the story of how an acronym has the power to redefine a life. We were left to grapple with the disruption in our day-to-day, the simmering anxiety, the associated faith crises, and the seemingly random unfairness of it all. (With the added complexity of a genetic disease in a child whose genetic history is entirely unknown.)

If you’ve known me for a long time, this probably isn’t news to you. The decade+ that followed was packed with weekly appointments, needles, and daily medications.

Our family was dropped into a life marked by the ups and downs of genetic, chronic illness, which was disorienting most days, because Calvin continued to grow, and heal, and fall apart, and even thrive, in spite of it all.

Slowly, the scary years receded in adolescence into quiet maintenance. It was all so non-invasive, we struggled to remember it was still real. Last May, we made the decision (along with his doc - shout out to Colleen Morrison at Memorial Hospital!) to wean him off his meds and held our collective breath that maybe his body really had healed itself.

Cal played a full season of baseball, worked with me at The Window all Summer, and started his Senior year in peace.

He was healing.

Until he wasn’t. Without warning, old symptoms emerged in December and by January, he was thrust beck into a familiar terror. He missed loads of school. He struggled to eat and then to talk. He went back to swallowing that little white pill each morning, suffering through the inevitable re-entry shock and the tortuous toxicity as his immune system sorted itself out with its old friend.

That’s the end of the story, for now. Cal is just starting his last season of baseball. He’s feeling fine. (He’s in NYC right now with the orchestra, living his best life!) He’s making big decisions about his future. The world is his daffodil.

But I know its contours feel a bit sharper, because I know what we thought was healing was just a reprieve. A cruel trick. Huddled against winter, inside this home, we learned (again) just how frail we are, how chaotic life is, and what precious little control we are able to exert over any of it. Our bodies crumble and rebuild, then crumble again. Our world stays sick. Even still, life is beautiful and hope is alive.

For these reasons and a hundred more (here’s one more: the CDC estimates 1 out of 4 people in the U.S. suffer from chronic illness and/or disability, which means at least a quarter of you reading this relate) I want to share a beautiful, brand new book with you: My Body and Other Crumbling Empires: Lessons for Healing in a World that is Sick by Lyndsey Medford.

She writes,

“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.”

I hope you enjoy this brief conversation with Lyndsey, that you follow her and her work (follow Lyndsey right here, on Substack), and that you buy her book for yourself or anyone who needs help remembering their worth.

A conversation with Lyndsey Medford, author of new release, My Body and Other Crumbling Empires

1. My favorite sort of writing draws lines between things we don't necessarily (or easily) think of as being interconnected. Your work is a beautiful example of that, where you weave together broad themes of faith, justice, and physical health. Bravo! Can you start by telling us why you decided to write My Body and Other Crumbling Empires and how you came to see the patterns or "fractals" between our bodies, our street-level lives and the larger world we're all part of? 

Thank you, Shannan! I didn't really start trying to understand my disease until it had ruled my life for about a year; I just had this vague sense that there was something wrong with my body and someone should figure out how to fix it. As I learned about the immune system and autoimmunity, I began to see my body as a much more complex interplay between many different, interlocking systems and cell types and organs, as well as between me and my environment. And I began to see autoimmunity as its own much more complex thing that can often be triggered and/or modulated by events in our lives and the "inputs" to the system, in addition to pharmaceuticals.

I started writing the book just to say, "Hey! My body is sounding alarms here! Our food systems, our capitalist culture, our teetering healthcare system, our loneliness--these are all actively harming us, and they're interrelated, and doing something about them is a matter of human health and human rights."

But as I kept writing, the book itself became a fractal leading me another level deeper. There is another layer to the wisdom of chronically ill and disabled people, not just about what we need to change, but how we go about doing so. I was learning to live with bodily systems that I couldn't comprehend, control, or predict--but nevertheless have some responsibility and agency within. Which is a very unfamiliar dance to most of us, but I think it's what we commit to when we commit to a life of justice and liberation.

2. You speak to our collective responsibility to one another - to us - so well. "We can only make sense of ourselves by attending to the places we are woven within the fabric of relationship." What are some ideas for better tending to each other through the slog and suffering of illness and disability? I guess what I'm asking is, how can we learn to keep our eyes open to the needs of the community and what are some simple ways we can practice showing up?

Hmm, what a lovely question! Here's what is present for me today:

• Disability access is one of those areas where our perspectives sometimes learn to change real fast just by getting in the habit of looking around and asking, "Who isn't here?" And then being willing to seek some of those people out and listen humbly to what they have to say--and being willing to be surprised by it.

• Your friends with chronic illness want to be invited, even if they have to say "no" a lot. I have also noticed that I spend my time with my sick and disabled friends more creatively. Maybe we just sit and read together, maybe we co-work or run errands together to make the most of our time/energy. 

• Suggest a way you would like to help. When someone says, "let me know how I can help!" it's hard to know what they mean. When someone says, "Can I give you a ride/do your dishes/send you a meal/pray for you right now," that is such a gift.

• Make friends with your own suffering, loss, and limitation so you won't be afraid of other people's.

3. By the time a book is born into the world, it's packaged up and pretty, but most authors know titling and finding the right cover can be an uphill climb. There's so much pressure to get it right in a crowded market. All of that to say, your title and cover are STUNNING. Can you tell us anything about that process?

For the title, I was inspired by Sarah Bessey's Miracles and Other Ordinary Things. I was definitely looking for a device that could help me bring together disparate but connected things. Bizarrely (as publishing nerds might know), it was one of the titles on the original proposal before I wrote the book.

The cover is indeed stunning! It's designed by Michelle Lenger and the watercolor art is by Daria Doroschuk. I wish I could tell you much more. I just made a Pinterest board of book covers I liked (four. four book covers.) and then talked through them with my editor and a designer at Broadleaf. They all had some sort of nature-y element. And a few weeks later I was opening a PDF with fear and trembling and this gorgeous, gorgeous thing tumbled out.

4. Now that My Body and Other Crumbling Empires is alive in the world, what is your great hope for it, and/or for its readers?

When I imagine people reading this book, I dream of healing.
We are still healing from ongoing pandemic trauma, and many of us from COVID itself. So many of us are doing the holy and unseen work of healing intergenerational patterns that no longer serve us. And of course, we dream of healing from patriarchy, ableism, racism, systemic poverty and classism, queerphobia, ageism, environmental destruction, and more.

And I guess I hope the experience of reading, itself, could spark some more imagination around healing as more than this sort of terrible slog just to make it back to some imaginary previous state. Healing can be creative, generative, joyful, strengthening, connecting, liberating, and shared. 

5. In closing, how would you describe your dream Saturday, right now? What is your body telling you about what it wants or needs?

During book launch season my body has really been craving lots of movement and doing things with my hands to balance out all the time staring at screens with my mind in the cloud. I think that's pretty much my dream Saturday! A gluten-free bagel sandwich and a book, a hike with a friend, a picnic with some more friends, and walking around town (any town!) exploring. It's perfect outside right now in Tennessee. Cooking with my family. Magic elves do the dishes. 

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Heartfelt thanks to Lyndsey for sharing this vulnerable, important work with us. Follow her on Substack and Instagram and buy her book!

Lastly, continuing the Calvin Lee Martin appreciation tour, I’ll be sharing something personal and extra-special (with his permission!) next week with paid “Secret Soup” subscribers. Are you on the list? Join us!