What doesn’t kill you makes you tender, salty, stubborn AF, and probably feral at finding joy in the fiercest shit imaginable.

I rolled out of Midway on my mobility scooter woozy-yet-grinning, scanning the passenger pickup lane for a red SUV and flash of brown hair. My best friend Alexis De Weese was picking me up for a girls-week book-tour-trip that almost didn’t happen. Getting to Chicago for the next leg of my book tour took all the blood pressure stamina and backup emergency medical plans I could muster, after the start of an adrenal crisis put me in the ER a few days before.

Look, who gets to have a best friend who takes off a whole week of work to companion them as a caregiver/personal stand-up-comic, just because they love you??

I have two best friends—three, really. There’s Mish in Denver, who has known me since I was a 17 year old freshman in college with too many books and a lot of undiagnosed neurodivergence. Then there’s my husband, Ryan, who is my bestest of all the best friends. Sixteen married years of chaotic challenges will either make you BFFs or bitter, and through many tears, fights-picked-by-me, and large quantities of trauma therapy sessions—mine, but also his—we became people who embrace each others’ epic challenges as the raw material of epic comedy and tenderness. When life kept being brutal, instead of blaming each other, we went the besties route.1 Amen.2

For a kid who didn’t get invited to classmates’ birthday parties,3 choosing to radically let others know my weirdest, most whole, and even weakest (medically) self has really turned out well for me. ☠️ Like, to be clear—I am one of the unluckiest little bitches who ever did sickness-stamp her way into almost every rare “this almost never happens” box on my medical table. What can I say? I HAVE A BINGO BODY! And, when you play this hard, this long, you end up with some incredible playmates. By necessity. Solidarity and collective care are my means of physical and soul survival.

So, on the scale of how I measure success—which is decidedly the scale of feral joy, frequent laughter, and the ability to be an open conduit for love—I am kinda killing it. Fittingly, my brand new memoir has also been killing it in He Who Shall Not Be Named’s Internet Bookstore in the DEATH category for most of the nearly two months it has been published.4 Slay, sick girl, slay! The point is, my physical existence by necessity requires the presence of radical amounts of help and compassion. I am ever pulled into the magic of presence because I have no other option but despair or doing harm to myself by trying to exceed the limits of my disabled body. Carried, not cursed. My life is like a psychedelic dream of love contrasted brighter by the brutality of my limits. Every day stings, but every day shimmers. (At least once.)

I’m rolling out of Chicago’s Midway airport on Toots in a cheetah off-shoulder t-shirt like the disabled baddie I am. Toots is my mobility scooter, by the way. And, duh, it’s Toots—as in, I like to roll through life powered by fart jokes. 💩 Like The Hail Mary, I toot to scoot… I’m looking both ways, crossing past buses, and wiping off sweat from my courage-makeuped-brow because orthostatic intolerance is a bad bitch. And LEX PULLS UP. And I squeal.

For a moment, nothing hurts. I am overjoyed to see my best friend. I am amazed to be so loved that she would do this Feral Joy Book Tour with me, despite it involving caregiving work and knowing it could end in the ER. Lex and I support each other every single day in unhinged venting and peak-silly text observations, especially on any and all absurdities, but nothing beats the wonder of a face with a nose that scrunches just so and the relief of arms wrapped around yours after too many chaotic months of scary, scary medical shit.

To see a friend, face-to-face, turns on the light in some dark corner of the home of our hearts. It takes you to a place where you can rest again.

And friendship is not fuel for the few lucky enough to be loved. Friendship is the river that courses through every wild soul. It is the water that, mostly, the most desperate-to-survive find. We who are lonely in brutal physical or mental limits, burned by trauma, jaded by churches that were kinda actually cults, and are, maybe, too salty for the people who used to like us: We are are not empty. We are explorers. We blaze paths into presence because the alternative is pain of body and soul so crushing we want to die. Do it cuz you are desperate. Do it even though no one else can give you Google-Maps-worthy directions. Take every small step you can to risk the pain of slowly finding fierce, feral friends.

That night, I spend enough time horizontal in bed to have just enough energy to scoot with Lex to a nearby Italian restaurant with gluten free dishes. The air is humid to my Coloradan skin, but a breeze blows across Lake Michigan from the land of my birth. I am laughing and tearing up simultaneously for three city blocks, when Lex points out a cathedral.

“They have the most beautiful crucifix. It haunts me. I think you would love it.”

And just like I know that I will need more electrolytes before bed, I know that I need to see this cross. Something inside me says yes. Something inside me knows there is a good box on my bingo card waiting to be stamped.

“I hope we get to stop there.”

The next day, I see my therapist on my iPad from the double bed on my side of the hotel room. It is her first time seeing my new face, newly reconstructed after a tumor hungry-hippoed my nose. I grieve the strangeness of having just gone through something horrific that left few scars.5 I am more tender than anyone can tell. I am sicker than you can see.

And a weight lifts from my ever-woozy body6 when I share some of the medical mystery that has been nearly solved since my tumor surgery.

“It was never my body’s fault.”

I hear myself say that out loud.

I knew that.

But now I know that.

I’m pretty sure we professional patients become some of the most opportunistic people in the world. When I found out I had to stay around Mayo Clinic post major surgery for over two weeks to recover, I figured I might as well try to get some of my side-quest yet-serious medical problems helped. For three whole years since the recurrent severe anaphylactic shock described in The Place Between Our Pains, I have had to trooper my way through nearly weekly infusions with veins that spasm and blow worse than poorly manufactured balloons. Bruises have been my biggest fashion statement, if we are comparing the count of cute fits to purple and blue blotches. For three years, every doctor has shrugged their shoulders at this part of my suffering—because they don’t want to bring me to the brink of death again.

For three years, I have stepped into a wild, dark forest with no trail and no map, trusting that somehow there will be a way through.

I am 37 and the fact that I am obsessed with being alive is kinda a miracle. I need intravenous treatment to stay alive. And every week, my veins blow worse. My conditions do stranger things. Precarity is as present in my life as pain. I live on precipices, closely watching every step so I don’t fall, fall, fall. The point is, something has to change. Something has to get easier for my body. She needs me to stand up for her, even though we keep being told that what we need is impossible.

So, I asked my Mayo face surgeons if they could refer me to a vascular specialist, truly only thinking that maybe there are ways to improve my vein health that none of my local specialists know of or can offer. Like friendship with others, being a good friend to our bodies is done one tiny choice by choice. Showing up small and open-hearted is how we survive.

I sat in a vascular specialist’s office at Mayo with bandages over my face and blood still in my hair, with my precious mother-in-law caregiving at my side and cried, realizing just how much I need help. And then I am stunned: the man had already read my entire horrific history and formed a multi-department plan to help me. He sat on a stool at my wheelchair eye-level, reached across the sterile space between us, held my hands in both of his, and looked me in the eyes.

“We are going to do everything we can to help you.”

If words can be blessings, those were the most surprising benediction.

He laid out a plan—a stepwise plan to get me a new central line to ensure my access to life-saving treatment long-term. This plan will change, but it’s a start. What started as a very firmly-worded series of portal messages advocating for myself turned into a possibility that for three years had been called completely impossible. And an invitation—into re-facing the biggest medical trauma of my life.

It wasn’t sour gummies and a good book on a beach of a process. I faced one encounter of medical gaslighting so terrible it deeply retraumatized me and required quite the emotional recovery. And yet, one terrible experience can no longer tank my trust. I’ve survived enough to face a barrier without breaking fully with a hope that is carried when I can’t keep going. Hope is, after all, a team sport.

I’ve come to count on kindness. A punch is never a period. There will always be enough kindness to keep going.

Three years to the day that I was in the hospital fighting for my life.

For those of you who have been following my story since the summer that almost ended me, Summer 2023, it’s really okay if you take a second right now to catch your breath. I know, you’re like, wait, didn’t your port almost kill you?

Didn’t you name your port after a French philosopher-mystic you didn’t realize actually starved herself to death—Simone Weil—and then you SERIOUSLY ALMOST STARVED TO DEATH LIVING ON DEXTROSE AND SALINE FOR WEEKS STRAIGHT WHILE EVERYTHING IN THE GODDAMNED WORLD MADE YOU GOING INTO SEVERE ANAPHYLACTIC SHOCK SO MANY TIMES THAT YOU MAY HAVE SET A CONSECUTIVE WORLD RECORD????!

And, that’s fair. I think we like each other a lot, and I can see how you’d want me to stay away from things that might kill me.

But the most beautiful thing happened out of my small choice to boldly and firmly advocate for referrals. I got the gift of clarity—and, its connective tissue of grief—about what almost ended my story short.

I’ll keep this part brief for many reasons, one of which is I am very sick right now and typing on a prayer while in bed.

If one medical provider had not prescribed Bactrim (sulfa) out of an overabundance of caution when my port recovery was more painful than expected,7 my life never would have gotten this fucked up.

One person’s choice to be overly helpful out of an overabundance of precaution and anxiety harmed my body permanently.

Sometimes help hurts us. Living with that knowledge and having to trust anyway that help can still help us is one of the hardest tasks of being alive.

Mayo’s interventional radiology team has held my horror story with respect, been thorough, and offered me extraordinary choices to feel as safe as possible getting a new port. I am the second patient in 15 years at Mayo in Rochester to not get the same exact model of port that was inside me during hell. The surgeon is seriously getting training in time for next Tuesday to place a Bard titanium port (which is equally as safe and effective as the power port) so that I can move forward without a trauma reminder implanted in my chest, connected to my heart. I was given kindness, agency, and autonomy after years of seeking them without seeing how it might all work out.

Through consultations with probably around 15 specialists and providers, both at Mayo and with my local medical team, I have learned the following. Even though I want to hoard these details for future books (lol), I want to share them now, because they really could save someone else’s life. Here’s what happened to me, at least what we are about 98% sure happened to me:

• I have a severe Bactrim (sulfa) allergy that we did not know about. I now know my grandmother does, too.

• My lupus was undiagnosed at the time, and lupus patients have such severe, even life-threatening immune reactions to sulfa drugs, including Bactrim, that rheumatologists preventatively recommend their lupus patients never take a sulfa drug. I have lupus, mixed with Sjögrens disease. I innocently took pills out of precaution that are basically poison in a body like mine.

• My allergist explained that I had all four of the possible allergic reactions a human body can have—all at once. Gell and Coombs Classification System identifies the four types. Essentially, a delayed and wildly severe hypersensitivity reaction to Bactrim happened roughly six days after beginning the antibiotic, and that created severe anaphylactic shock. And when combined with undiagnosed lupus and my already complex immune system, this sparked a cytokine storm so giant I remained living near or in the realm of severe anaphylactic shock for over a month. The anaphylaxis never stopped until we took the port out, but I have learned that even though that circumstantial correlation freaks me the fuck out in getting another port, that the correlation is not causation and the medical fact of the matter is, my body was so hyper-allergic then that the port was a just a jet stream of wind blowing through a nation-sized category 5 hurricane.

• All of my doctors have scoured medical literature from the entire world, and there are zero documented cases of anyone being allergic to a port itself. I have a special body, but good God, surely I am not one in 8.3 billion.

“It’s a miracle you didn’t die,” my allergist said.

“If one person hadn’t made a choice trying to be helpful outside of their expertise,” I held my head in ny hands, “my body would never have been permanently damaged, my bones never would have died, lupus would have probably never gotten this bad, I wouldn’t have lost three years of therapy income… Wow.”

“So many people die from Bactrim,” Dr. S said. “And most of them only have one of the four kinds of allergic reactions.”

“Bactrim saves lives, but it kills so many people. I’m so grateful it didn’t kill you.”

Do you realize how human this is? The most statistically unlikely thing happened to me, in a body that already cozies up to the thin ends of bell shaped curves like it’s her effing mission in life. But the basics are the stuff of being human. I basically had a human car crash. A freak natural disaster. Absurd and awful things that we could never predict nor prevent happen to humans every single second of every single day.

Getting this clarity gives me a gate into the grief of the world.

I am one of many. Being a human being on this tilting, heating, warring planet is fragile and finite. The most terrible things that have happened to me arrive screaming, but the more I learn to hear my body’s cries as echoes of an existence that is shared among billions, the more I trust that no sorrow can ever fully crush my spirit.

Death is not my enemy. It’s my doorway into dignity. I will die one day. I hope not soon. I live with the quiet knowledge that many of my conditions could cut my life shorter than most. Accepting that I could die young liberated me to dare to love the life I was left with—including a life that became so unbearably painful, I wasn’t sure I could survive it. I craved death like sleep for so long. Some days, I dream of the rest that is coming, when I won’t spend days in severe pain in an ER, like I did Monday.8 Welcoming my eventual death and the bitter tastes of it I get every single day in a body that lives off strong immunotherapies, high dose steroids, with a big ACE score and a shit-ton of trauma—well, it strangely welcomes me into life.

Because of all I have survived, through the sustenance of kinship with other human beings holding their own griefs and pains—and that includes you, my actually-beloved readers—I now live with a vibrant imagination that fuels my days through even the sickest, shittiest circumstances.9

That is true on the darkest days, when I prefer the thought of death to life. I no longer have to fear the darkness as much. I can be in the darkness, bending down to rest when I feel broken, because I have seen the strange magic of how letting my heart break is actually a gate into a metaphysical garden where anything can kill the body but nothing can fully crush the spirit.

Despite disease so fierce most people and medical providers would probably say I should park my body in a bed or possibly a hospital, for like a very long time, I’ve gotten to meet hundreds of readers across America on a book tour so precarious and beautiful that pulling it off has basically been a work of post-post-modern public performance art.

Last week, after sharing from The Place Between Our Pains and meeting readers in Chicago at a lovely indie bookstore (Bookends & Beginnings!), I spent the entire day in between book tour stops on calls with many, many medical providers. I took the kindness shared the night before—the woman who said she didn’t die by suicide because of my book; the twenty-three year old living with complex diseases who needs to imagine goodness is possible in a life that looks so different than her peers, the cancer patients sporting ports and scars and the same weary weight on their shoulders as mine—I took that kindness with me into every brain-breaking call.

I am tired, still healing from major tumor removal and reconstructive surgery, flaring bad, living on the edge of the ER more often than not, facing down some treatment needs that suck, in terrible pain with symptoms that make the flu look friendly, and I am having the fucking time of my life.

Bending toward what is broken has made me into a person who can dare to welcome joy anywhere she shows up, no matter how tiny or trivial, no matter how ragey I feel at any given moment, because I’ve come to accept the metaphysical nature of reality. Being human isn’t being a self-contained bag of flesh. Being fully human is embracing the expansion of your identity and integrity to be more than an individual but an interdependent, star-formed-being who is ever-connected to energy beyond your own power to conjure, create, or sustain.

The broken parts of your body or spirit are simply the paths where energy is already pulsing toward you in forms you have not yet recognized or received, ready to sustain you moment by moment through the next labored or light breath. You want the wish of a life free from pain. And yet it is your pain that will propel you into being more than your pain. Joy is magic, besties with grief, both smaller and bigger than your wishes, and here right now on the hardest days. Your eyes will adjust to the dark. Everything can shimmer.

In the brief interlude of interventional radiology calls from Mayo and tracking down my allergist to make sure I can test my body against the titanium, silicone, and polyurethane that compose my new port before the procedure, Lex and I decided to make one final stop in Chicago before driving to the next book tour stop in Grand Rapids.

Holy Name Cathedral.

I rolled into that soaring wood and stone sanctuary beside Lex, hushed and hallowed. For so long, I had let my faith lie fallow.

I chose to imagine that perhaps when I feel like I am falling to my death, there is always a web of love beneath me like mycelium in a forest, woven beyond what I can see, hidden in dark soil, somehow pulsing with sustenance from a whole world of living beings beyond my own breath, upholding and sustaining me even when I cannot see it, am too sick to look for it, and can’t even muster the effort to reach down to dig.

I rolled to the foot of a cross on which Christ is still nailed, still scarred, still speaking the words, “My God, my God, why have you forsaken me?” and I saw the face of my best friend whom I couldn’t see much for years.

Like seeing Lex after so long and so much, I saw the face of a Jesus I still do not understand and yet adore, and it felt like coming home.

Nothing that lasts inside me ever died. Not joy, not faith, not love, not ridiculous humor, nor the salt that is essential to the synapses that keep us going through stress. Nothing had died. I looked at the cross and gazed into the face of a disabled God who has a body that has experienced betrayal and friendship and joy and death.

The cross at Holy Name Cathedral is blocked and jagged, and around Jesus’s body, there is space. He is emerging. He was expanding outward toward me straight from the center of what killed him and led to—mystifyingly, statistically-impossibly—more life.

I think of a part of my memoir, in which my friend and fellow mystic, Tara Owens told me this:

Tara pierces my reverie. “In Psalm twenty-two, forsaken actually means ‘loosened.’”

“What?” My jaw hangs open. “Tell me more.”

Tara regularly studies scripture with Jewish rabbis. She steeps herself in ancient wisdom like tea.

To explain the nuance of forsaken, she paints me a picture of swaddling; a baby wrapped tight in a blanket by their parent to sleep or be soothed must be unwrapped if they are ever to crawl or walk. Forsaken means loosened, for the sake of expansion.10

And though I knew in part that I had never been forsaken, that day in Chicago, three years to the week—this week—of my body almost dying and dying and dying, I now know in every struggling cell of me that I was never forsaken in the dark.

I was always being loosened, for the sake of expansion.

I was always being led into more life.

I saw the face of my friend, and all my grief was also gratitude.

I saw the face of my most faithful friend, who first showed me pain is not a prison but a place from which we can always emerge, expanding. And I called my painful body friend, too.

It doesn’t have to make sense to be sustenance. You don’t even have to see it to be sustained by it.

For so long I couldn’t see Jesus’s face, not because we were at odds or because God ghosted me, not because I was being petty or prideful or believing a lie. I couldn’t see his face because I was busy having to look at brutal things. That was simply where I needed to look to survive. That was more sacred than scripture could be. That was enough. I let my three year Silent Saturday hold death without having to defy nor deny it. And in those silent years, daring to not define nor overly describe a faith that was coming undone, I was actually being loosened, let go, freed to become a full self, bigger than the bounds of the tight trappings of theologies and traditions that cannot bless every kind of broken body, every iteration of human beauty—bodies that dare to disrupt the small categories of sexuality and somatics and success in a church and world that want us silent and easily controlled. It was never death to my spirit. It was always an invitation into aliveness that no oppressive barriers can stop pulsing out into a world in need of joy.

I have been loosened. I have been expanded. In what many have seen as suspicious, less spiritual, even less trustworthy, perhaps, I have been blazing my own necessary path through a wilderness so fierce and stunning you wouldn’t believe the wildflowers and sunsets if I showed you pictures. And now, that path connects again to a spiritual home I wasn’t sure I’d ever feel safe enough to rest in again. I am talking about a body, a Body, and the body of this earth.11

Four hours later, shortly after Lex and I crossed the state border into Michigan, the place that most shaped me from birth to seventeen, my first and foundational home, my final doctor appointment of the day happened by phone. The provider who is most cautious—who most protects my health from the consequences of all the scary treatments I need to stay on this earth—enthusiastically signed off on the plan for me to get the port that I hope will help sustain me for years to come.

So, I head to Minnesota Saturday, tender, saltier than some of you wish I would write, stubborn to live as fully as I can even if my life never gets easier, trusting beyond trauma that I can take this step and still live, trusting the sustenance of kinship pulsing between us in pain carries the joy that will always be enough.

—KJ

My Minneapolis/St. Paul event on Sunday night (19th) with Laura Kelly Fanucci and Elizabeth Berget is sold out! But you can still join me and my friend and fellow therapist, Dr. Hillary McBride, for a soulful and tender free hour long workshop Monday night, on the eve of my port placement surgery. It will likely feel like an invitation into a ritual around your own grief—welcoming grief, expecting joy—as I will be honoring the grief of what happened to me three years ago as I step into a new season with a new port. We shall hold our griefs, together.

• Monday, July 20th. 5pm PST/8pm EST

• Free with purchase of any edition of The Place Between Our Pains (Did you know I narrate all of my audiobooks? This one is super special, cuz, emotions.)

• Register here!

This summit starts tomorrow! It’s led by an amazing immunologist who also lives with Sjögrens Disease, Dr. Kara Wada. And I have the privilege of sharing a recorded gathering of my book tour event with Jeff Chu 朱天慧 in Grand Rapids. A reader who is a filmmaker (!!!) generously offered to record the event so that those of you who are too sick to attend a book tour event or live too far away can be part of the joy of gathering. 😭

And since I’ve been too sick to record an extra talk, all the things I was hoping to say about hope and joy in sick bodies were part of that night anyway, so the team at the summit graciously accommodated my disability needs and is sharing this special recording for you and others. What a gift. Hope keeps being such a team sport. Amy Warkentien of Flourish Films in Grand Rapids, MI, you are amaze. (There will be more edited versions of this recording in the future.)

Register here. There are options to purchase talks so you can watch them in perpetuity too!