Good to be True
When Anecdotes Are Antidotes
The best things that happen, I’m afraid people won’t believe. And this is a pickle because one of my favorite things is telling stories about strange, beautiful, uncanny things that happen sometimes when I’m paying attention. These stories aren’t about me. They’re about real events, real people, and real places that leave me in their wake feeling more in awe of life than I was before I experienced them.
Awe is a pretty great feeling. It also seems like one that we twenty-first-century hustlers may be losing touch with. Of course I can’t know this for certain: my gestalt-y hunches about the state of humanity are often just projections of my own state of mind (like, everyone is struggling with a screen addiction nowadays, right?). But maybe, sometimes, my sense of the whole is as well-founded as anyone’s. Maybe each of us can sense the trajectory of a group that we are part of, as much as starlings sense direction inside the mass of a murmuration.
IF my sense of our collective awe-shortage is accurate, I don’t blame any of us for it. First because we’ve all got lots of reasons to feel other ways about life besides in-awe-of it. Corporate greed and raging wars and people relentlessly acting-out childhood trauma on each other in professional and political and personal relationships, are far from awe-inspiring. I also wouldn’t blame us for being short on awe because American pop culture has designated zones for awe that are few and far between: we’re allowed slack-jawed awe when experiencing a total eclipse, jumping out of an airplane, summiting a mountain, or watching someone’s life change on America’s Got Talent. It’s perfectly fine to reckon with the miracle of life after experiencing the birth of a child or healing from a life-threatening illness. But we get taught that wandering the streets in more regular amazement is a bit… kooky. When we’re not viewing the earth from a space-station or surviving a close brush with death, Americans are supposed to just be chill, and act like existence is no big deal: like we’ve seen it all before.
A last reason I wouldn’t blame any of us for running low on awe, is that we’re living in an odd little epoch in which mystery is not popular. Our economy relies on us believing that we can pay to be told the way: the tiny machines in our pockets guide us in everything from our macros to our metabolism, to our daily schedules to our driving routes to our career paths to our dating lives to our family planning to our playtime to our politics. And in order to trust the machines to guide us, we have to view life as a thing already known and owned, mapped out and nailed down, divided up and conquered. Which, doesn’t leave a lot of room for mystery, wonder, or awe.
There are so many good uses for the systems we’ve built and the machines we’ve made. But there is also a deep benefit to navigating life without them sometimes: being guided instead by our own desires, instincts, curiosity, and joy. When we do that, we tend to stumble more frequently upon things that spark awe, delight, surprise, and discovery. And then, we have better stories to tell.
In my childhood home, awe-inspiring stories were a family tradition. My brother and I were raised without a religion, and so Mysteries of the Unexplained were as close to worship as we got. When friends and family came over, after food and laughs and post-dinner games of cousin-chase that usually ended with someone in tears from a rug-burn, story time started. And mixed in with the usual tales about feats of strength, unlikely allies, and getting into and out of trouble, there was always a sprinkling of the supernatural: stories about miraculous rescues, predictive dreams, mysterious strangers, and all manner of wonders in the sky.
The result of these mystical, magical tales was always the same: awe-restoration. Listeners of all ages sat up a little taller, eyes a little wider, open-mouthed smiling, reanimated by fresh consideration that there really may be more things on heaven and earth than are dreamt of in our philosophies.
In middle-school and highschool, my friends and I continued this tradition. A highlight of our hangouts were late nights lying on someone’s roof looking up at the stars, making juke-box requests of each other: “Tell the one about the time when you… had that premonition that saved the day… saw a ghost in the yard behind your church… stumbled on a time portal in the wild desert… saw a full circle rainbow in the sky at sunrise. This revery usually came after nights of being crammed into hand-me-down cars, inhaling first- or second-hand Marlboro smoke, swirling around town on warm desert nights like little marbles spinning in a bowl until we finally came to rest somewhere in the center, looking up at the starry desert sky in the inevitable stillness of awe.
I couldn’t have said then what the point was of all our supernatural storytelling. But I think it was medicinal. Through continued friendships, I know now that most of us back then were contending with decent amounts of family pain at home. And in a predominantly white middle class culture that put a premium on pretending perfection, most of us hid that pain. But we could sense it in each other, and awe-inspiring stories were a general remedy we could offer. It was the very best thing to see a bogged-down friend sit bolt upright after hearing a strange-but-true story and laugh-yell “WHAT?! No! Way!…”: restored to their rightful state of sparkly-eyed delight about life.
Our mystical storytelling tradition was also due, I’m sure, to growing up in the southern Arizona desert. I’m visiting Tucson as I write this, and am remembering that there are little monuments to miracles all over the place here: missions and grottos and murals and roadside altars that mark the spots where grace touched down or a beloved one departed, to quietly mark the scope of possibility. There is also an indigenous folklore here that holds spirit guides and animal teachers and wonders of the natural world, which– even for kids not lucky to be born into those traditions– wove its way into our worldviews through school visits from tribal leaders, art, music, and open ceremonies.
The desert itself also fosters an awareness of the unseen. An invisible, brimming electric stillness hums up from the earth in summer to tell you when the monsoon rains are about to fall. Animals and crystals and water all live underground here, so they’re around, just out of sight most of the time. Queen of the Night flowers bloom delirious-sweet blossoms just once a year at midnight, and giant blue Century Plants wait a hundred years to send up forty-foot-high Dr. Seuss looking flower-towers. In the desert, if you sit in one place long enough, a humming bird may come right up to your face and hover, looking into each one of your eyes.
Like with any monstrous prince or princess who can only break the curse and reveal their true beauty if someone looks for it in them, loving the desert requires clear sight: if you look at it one way, it’s just a bunch of dirt and sticks. But if you look at it another… slow, patient, attentive… it is overflowing with magic. Growing up here taught many us to look the second way. And once you’ve got that, it’s hard not to rack up stories about wonders.
Just as I finished writing that part above, a humming bird came up and floated in front of my face, about eight inches away. Like, right after I wrote the bit about them doing that. The last time this happened to me was maybe 15 years ago, so the coincidence was startling. She was small and brown, and floated with her little belly hanging, wings a blur, calibrating a bit to the right, then to the left, visiting each of my eyes one at a time, and staying so long I started to get a little scared… maybe for 30 seconds. Then she circled me twice and flew down in front of my chest, pointing her needle-nose at my heart for a while, and flew away.
I’m wearing gray, so I don’t think she took me for a flower.
When it happened, it took me a beat to settle down and just let myself… have that experience. My first response was a sort of adrenaline-fueled alarm, wanting urgently to make logical sense or story out of what was happening. Luckily, the hummingbird waited me out. And once I settled down, and just let myself have it without any interpretation, it caused a cascade of feelings that moved from astonished delight, to a giddy, joyful gratitude, to something that realigned my spine, cleared up my vision, and left me brimming with new life.
But I wasn’t going to tell you that it happened. Because of my earlier-mentioned concern: I think it sounds unbelievable. I think it sounds too good to be true that a hummingbird would do that very thing immediately after I wrote about it. And also too good because of how it serves the story. How it helps me return to my original point: that these surprising, awe-inspiring moments that I most love to tell stories about, are the ones I most hesitate to share now, because I think they sound un-true.
I suppose I’m more concerned now about being disbelieved than I was on those rooftops in high school. Over time, I’ve become more adjusted to the socio-economic party line that Real Life is a known commodity: entirely unmysterious and unsurprising, knowable and claimable, predictable and mappable. Which means that magical moments and poetic synchronicities simply fall outside the scope of possibility.
Still, privately, I really welcome a good miracle. That’s any moment, big or small, that reminds me this life-on-earth-thing we’re all doing is an as-yet a largely unfathomed mystery, absolutely capable of wonders. And sometimes, I still really want to talk about those magic moments. Like with that hummingbird. She showed up as I was making this for you, and so it only seems fair to tell you. So I’ll just have to hope you believe me.
The story I came to tell you today is one of those. It’s one where what happened fell outside of what is supposed to be possible. It’s about a peacock named Hope, a cross-country train, and a knife-wielding, blimp-flying zombie killer who saved my life. This story is true. But what happened in it is so good that it took me some time to let myself have it. So, seven years ago, I tucked the experience into a corner of my brain where I could deal with the astonishment and gratitude on something like a drip-system, in measured amounts that I could handle. And in the meantime, I tried to make sense of it.
That was until last week, when I returned to the valley at the foot of the San Gabriel Mountains where the adventure ended. And, confronted with the reality of the place, the people, and the peacock, I finally stopped trying to make sense, and just let myself have what happened. I let the whole wave of astonishment and gratitude overwhelm the drip-system and wash over me. And so I’d finally like to tell you this story.
I realize this essay is already longer than the listicles and life-hacks normally platformed on Medium. But if you’re in the mood for a little journey, I’d be glad to have you with me for this one.
It started in a pizza restaurant in Old Town Chicago. In 2016, I was teaching at The Second City, an improv comedy school where we share techniques that serve people who make Saturday Night Live, Ted Lasso, Key & Peele, The Office, Curb Your Enthusiasm– really all the great ensemble comedies of the last 60 years. I still teach there, and I love it. The place provides a unique little set of tools that help people trust their creative instincts, and trust the same in each other. It’s basically a laboratory where people get to find out over and over again that they can trust the life inside them and around them, which is a very fun thing to get to witness.
Sitting in that pizza place between classes, though, I was feeling low. For about three years, I’d been having a weird thing happen where my tongue and lips would go numb, I’d get pins and needles in my hands and feet, and have difficulty speaking. Leading a class, I would suddenly lose words. If I walked across a room while it was happening, my muscles would seize up and shake like I’d just run a marathon. Accompanying all this was an over-the-top feeling that if I didn’t eat something, I’d have a seizure or die. When I ate, I’d feel better fast.
I’d been to the doctor 3 or 4 times during each of those three years, saying I felt like something was wrong with my blood sugar. They’d take my blood, test it, and confirm again that my sugars were around 32, which is low. Then they’d tell me to “keep snacks in my purse” and send me home.
Waiting for pizza that afternoon, I saw a woman rush in off the street, past the cashiers and behind the counter. She grabbed a cup and filled it with soda without asking. She was shaking like I shook sometimes, and looked like I felt during those episodes. Then she drank the soda and stopped shaking, walked over to the cashier, paid and apologized, explaining she had severe hypoglycemia. I called my doctor the next day and asked him to please make me an appointment with an endocrinologist.
From there, they found the insulinoma fast. An insulinoma is a rare neuro-endocrine tumor that produces insulin constantly. I’ll tell you a bit about the science because it matters to the magic of the story. Basically, a normal pancreas only produces insulin when we eat, to store away a bit of the sugar from our food as fat, to be used as energy later. Then it stops making insulin when we’re done eating, so that the rest of the sugar from our food gets to circulate freely in our blood, being used by our brains and muscles and organs as fuel. With a pancreas tumor that makes insulin all the time, all the sugar is steadily being pulled out of the blood and packed away as fat. Which, after a couple hours, starves the brain, muscles, and organs.
The endocrinologist said I should eat every 3 hours until surgery to remove the tumor, and that if I didn’t eat like that, I could have a seizure and die. I was already eating that way: waking up with my heart pounding in the night every few hours to eat a handful of dried pineapple that I kept on my nightstand… snacking on gummy colas all day between meals so that my brain and body didn’t start to shake and shut down.
I gained 45 pounds during those three years. And while sometimes it was a little bit fun to be able to tell people that candy was my medicine, constantly eating sugar in order to keep from dying was exhausting in a way that is difficult to explain.
The Chicago surgeon I was sent to, said that to remove the tumor he’d have to take out half of my pancreas and all of my spleen. Not because those organs were sick– the insulinoma was small and contained, and not malignant. But because the pancreas is a delicate, weepy little organ that is difficult to remove something from, and the blood vessels that feed the spleen run through the pancreas, so it is far easier to just cut the pancreas in half, sew it up, and take out all the rest: veins and spleen and all.
That organ-removing surgery was the standard of care. And the surgeon said I didn’t need my spleen anyway, and that I’d be fine with half a pancreas — maybe some antibiotics or diabetes medication down the line, but fine. I believed him, and read about football players who had their spleens ruptured and removed and went on to live perfectly healthy lives.
But I just… didn’t want to have that surgery. I had a strong, deep, inexplicable feeling that I shouldn’t have my spleen removed. I didn’t know why then. But it seemed important.
So I asked the surgeon if there might be a way to keep it. He seemed unsettled by the question. He seemed almost angry that I asked. I apologized, and said I hadn’t meant any disrespect at all, and that I’m in awe of what he does. He softened and told me he forgave me; it was understandable that I would be scared, attached, emotional.
I walked out onto the downtown Chicago streets feeling confused. After walking for a while, I decided to find another surgeon.
The search to find a doctor who would let me keep my organs took eight months, with visits to five different hospitals and lots of searching and waiting in between. It took that long because insulinomas are rare enough (one in two million people) that most pancreas surgeons have never removed even one. And of the tiny handful of specialists who have, almost all of them only offer the standard of care: the spleen-removing procedure. So, I was searching for something rare.
While I looked, I was away from home. Partly because I rented out my apartment so that I could afford to take time away from work. But mostly it was because each time I reached a new hospital, I always thought it would be my final destination, and I’d be going home soon.
I stayed in hostels and cheap boarding houses to be thrifty. And searching went like this: I’d call around and ask for recommendations from people I trusted. I’d look online, reading medical papers and watching public talks. When I finally found someone who offered an alternative procedure, I’d call to ask if that alternative would be available to me, and their staff would always say they’d have to see me in person.
So I’d make and mail a pound of copies of requested medical records, wait days for confirmation and then weeks for the appointment date, travel to another state, have more tests, and meet with that surgeon to see what they’d say. And then, each one ‘til the last would tell me that because I was “young and healthy”, they’d be “pleased to offer me the standard of care”. They’d explain that the experimental procedure was only for people too old or too ill to physically endure the standard surgery.
When I’d gently reiterate that I was still interested in the alternative, a couple of the surgeons were kind in declining. One even referred me to the next fellow I went to see. Others weren’t as kind. With them, like with the Chicago surgeon, asking to keep a part of my own body seemed to be insulting. Leaning back in their chairs, smoothing their ties, looking down their noses, narrowing their eyes to squint at me like I was a culprit, they’d tell me I was being emotional, irrational, and attached.
Each time that happened, I’d thank them respectfully and go back to wherever I was staying in that hospital’s town, and start looking again.
Some of the hostels and boarding houses I stayed in had softly ticking clocks, and old leaded glass windows that made rainbows fall across matted carpet in the afternoons. Some had avocado bathroom tiles from the 1970’s. Some had a mix of medical students and itinerant workers who’d be far apart on the financial spectrum one day, but were comrades in the moment. I liked having dinner with them, everyone standing around a kitchen eating directly out of their own pot or pan, telling stories. Some places had bed bugs or walls crawling with black mold, and then I’d pick up and find somewhere else.
That journey happened between October and May, so these were cold months full of researching and reaching out, waiting for return calls, the smell of hospital corridors, awful fasting tests, episodes of Pam & Jim’s love story to put me to sleep at night, lots of midnight pineapple, fingers stained by pockets full of skittles while trudging through deep snow. I remember an abiding sense during those days that my life depended upon doing everything right — who I trusted, how I communicated, when I ate, how I budgeted. But doing anything felt hard. With the constant insulin in my system, it was very easy to run out of energy.
It also became easy to feel about myself the way those surgeons seemed to feel about me: that I was bad for looking. Following an inner sense of direction when it comes to art-making, or comedy, or exploring the desert, is lots more fun than trusting one that conflicts with respectable experts and consensus medical advice. And to balance that external pressure, the feeling I had wasn’t some clear premonition. It was just a deep, quiet, clear “No”, until there was a “Yes”.
Back in September, just after the diagnosis and before the long search, I took a little time to make sure I was up for it. A friend offered me a little cabin in Galena to get away for a few days, and another friend loaned me his car. And because of their kindness, I drove out into the middle of deep, sweet, lush late-summer Illinois with shoulder-high wildflowers gone to seed, and canopies of giant leaves like slow-motion waves of green stained glass.
I stayed in the woods for three days, and walked down long paths that stopped being paths and became thick, delirious portals to late afternoon sunshine and long shadows and time. Walking there, I was fat and breathless, my tongue always tasted like metal and soap, and the nerves in my feet burned and hurt, as neuropathy was a big part of things. I remember thinking that it probably wasn’t safe to go into the wilderness alone with my body being that way. But that was okay with me.
I don’t mean that I was trying to disappear. But I’d gone to those woods to hold the question of whether I wanted to get help at all. I knew major organ surgery would be an ordeal, and that finding a specialist who offered an alternative would be difficult, and that recovery would take stamina and persistence. At that time, I didn’t feel clear that my life was worth the effort it would take to save it.
To explain that, I’ll need to tell you the thing that I wasn’t telling my friends on those late-night rooftops in high school. And, that I also haven’t shared on any of the stages or pages where I’ve told stories in the decades since.
I’m mostly successful at writing around other people when it comes to painful interpersonal things. In stories, I jump over and build around human-shaped holes that hopefully only I’m aware of. But I can’t seem to tell this story while leaving this part out, because it has as much to do with why I was holding my life in my hands at that moment in the woods, as with the deeper reason I started telling awe-inspiring stories in the first place. And I’ve promised you a true story, so here goes.
If you knew my parents while I was growing up, you’ll know that they didn’t seem depressed. My dad is a grand presence, 6'8" tall with a beard and a big smile and lots of jokes and laughs. My mom is tiny and lovely like a fairy; always with her nose to the wind like she’s remembering another time or place. They are both in their 80’s now, and still charismatic charmers. But behind closed doors in my childhood home, they each had a tremendous amount of sadness, which they handled by telling me about it from the time I was pretty small. For each of them, I was a basket and a balm, an audience and a wailing wall.
I don’t know why this was, other than perhaps because I was the girl child. But all of it was a big secret, because outwardly, things looked good for my mom and dad. They both had healthy bodies, with lots of friends and extended family living near by. My dad owned a local motorcycle shop, which let my mom stay home with my brother and me until she returned to her work as an elementary school teacher. In the 1980’s, their combined incomes allowed us to live in a brick house that I always thought made us rich because of the big trees and desert flowers and climbing rose bushes my mom tended to, and the swimming pool my dad put in. My parents both wanted a good life for us, and they worked hard to give us one.
And also, from the time I was ten or eleven, each of them talked to me about their pain: about the doomedness of humanity and the misery of their own lives. I don’t think either of them considered this to be wrong… maybe just an honest way to communicate with a person who loved them a lot. But it was heavy for me. Not just because it reversed the poles of emotional need and nurturance that normally flow North to South from parents to children. But because it fostered a quiet, lasting sense that my worth, and my lovability, came from my ability to save them.
At that time (of course) I didn’t know that. I just knew I loved them both a lot and wanted them to feel better. So I took seriously the job of relieving each of them of their pain, and tried many tactics. Early on I tried compliments, which seemed to make them feel better momentarily, but never stuck. For a while, I devoted all my wishes to their happiness whenever my school bus went over the train track overpass and I held my breath. I tried being their counselor, borrowing skills from the therapist I took myself to see after school. In my early teens, I immersed myself in New Age theory, recommending books, passing along suggestions, and speaking (probably very annoyingly) in the jargon of authors and meditation teachers. There are diary entries from my tweens showing my big idea that if I could “take their pain into my body”, I could heal it for them myself, and return to them with cures.
That cockiness is embarrassing now. And in the end, the whole rescue mission was about as successful as you might imagine one would be as conducted by a codependent tween with a savior complex. And as mentioned, my parents are both alive and well, so even without my saving them, they somehow miraculously survived.
But there were long stretches of time where I didn’t know that was how things would go. And those early efforts were formative. As any formerly parentified child knows, responsibility without authority makes for muddled, frustrating, grandiose feelings of being an eternal failure at the most important job in the world.
During those years, I did stumble upon one remedy that sort of-sometimes worked. Which was pure, high-grade, awe-inspiring true stories. With our family tradition of storytelling, narrative was a language both my mom and dad spoke fluently, and there seemed to be transformative potential for each of them in hearing about some wonderful thing that happened to someone else in real life.
So I collected beautiful things I saw and heard: moments of human kindness, unlikely allies, uncanny coincidences, grace, beauty, miracles. I kept my eyes peeled for these things, and then learned to convey them in a way that could uplift my parents: if I told a story well enough, sometimes, one of them would light up, seeming renewed by a sense that life was more gentle, more just, or more wonderful than they’d thought it was before.
There’s a direct line between that childhood tangle and the work I do now. Maybe like some comedian friends who got funny young in order to save someone, that’s just the dark origin story of a super power. Because I became attuned early to seeing the good in people, and finding and sharing stories that might restore their hope a bit, gathering good people and good stories is something I have done a lot. I’ve hosted decades-long live storytelling shows, and interactive group games to help people accumulate their own awe-inspiring stories. I’ve won a bunch of story slams, taught hundreds of improv and storytelling workshops and classes to adults and kids, and coached almost as many public speakers and performers, which led to co-founding the storytelling & creative collaboration programs at performance training centers and business schools. All this with an eye toward that same thing: helping people remember that they are good, that life is amazing, and that they aren’t alone.
And, up until 2016 when I was diagnosed with the insulinoma, there was an adrenaline-fueled desperateness to my work in all of that. Even though the work itself was generous and joyful, there was a selfish fear behind it all that made it unsustainable. For a decade prior to the tumor, I worked long hours for too little or no pay, and ran so fast all day I forgot to eat and drink water and go to the bathroom. During those years, I was always out of money on my bus pass, choosing between groceries and rent, and exhausting myself in that selfless/selfish-sacrificial way that some teaching artists do: feeling if we can just make something that uplifts other people’s true hearts, then we ourselves might finally be worth loving.
In those rushing years, I was grieving the loss of beloved people in my family, the sudden loss of two dear friends, and a man I’d thought I’d love forever. While most of my peers were getting married and having kids and buying houses, building careers and putting down roots, I was just running in place, desperately trying to win back love by being good enough at uplifting and empowering others: folded back into the same effort that formed my brain growing up.
So, that’s what brought me to that cabin, unsure if I wanted to save that life, or let it go, as it seemed to want to go. I was really tired. And the daily hypoglycemic episodes with numbness and muscle spasms and inability to speak, felt like too much. I don’t think I told anyone this at that time, but I was aware that with the insulinoma that I had an easy out: no elaborate schemes or plans would be required if I was done. If I just didn’t eat for a few hours, everything would be over. I could take a walk without a snack, and not come back.
Those three days in the woods were quiet. I took walks, and came back, and sat on the high back deck like a dock overlooking an ocean of trees. I put my phone away somewhere and let the land have me, which was a thing I learned to do as a kid when things were hard: just give over to any disembodied love that might hold me there. I cried a lot. I grieved the people I had lost: the ones I didn’t want to let go of, but who (perhaps understandably, in all my desperation) wanted to let go of me. I sat with their rejection, and how much it hurt. I sat with how exhausted I was from trying to be worth loving. And as I did, I felt a familiar, sour, whining pain in the upper left center of my abdomen, surrounded by prickly electricity, like a million needles.
I pulled out my laptop and looked up that part of human anatomy, and found it’s where the pancreas dwells. Then I googled pancreas + energy + meaning + emotion and found words about self-esteem, rejection, loss of love, not being good enough, and feeling unworthy.
When I stopped googling and crying, I closed the laptop and looked out into the low golden light of the forest, and saw something move down below. I squinted, and stood, and without thinking too much, took the back steps down to see what it was. When I reached the forest floor, there was nothing. So I decided to just follow intuition and take an evening walk.
It was quiet, and matted leaves and grasses on the path softened my steps. The air smelled like sweet hay, and the dry, wheat-colored weeds and reeds around me were as high as my head. After walking for a few minutes I stopped, because onto the path about fifteen feet in front of me, gingerly, cautiously, stepped a large peacock: shimmery azure and emerald, iridescence into violet, an apparition of such absurd opulence in the middle of Nowhere Illinois, that I gasped.
I stood looking at him, and he looked back for a good while, taking turns seeing me with each of his eyes. Then he fluffed out his tail — not up like a fan, but laying it out once again, more perfectly, like an impossibly lush carpet or bridal train. Then he walked slowly down the path that I was on.
I followed him. And he let me. I kept a respectful distance, and for a time, I tried to overthink it … tried to interpret or make sense of what was happening. And then, I just quit trying. In the logic of a late afternoon daydream-but-real-life encounter with a might-as-well-be-mythical being, I stopped thinking and just let myself have it. And I was overcome with a giddy, grateful awe.
When I got that, he turned around and looked at me, and made a sound in that loud, weird voice peacocks have that sounds like a person doing an impression of a peacock. Then he left the path and disappeared into the reeds where I couldn’t follow.
I stood for a long time and listened to him walk away. And after that, I decided I wouldn’t let to of my life yet; I’d set out to find a better surgeon.
Besides the peacock, the 8-month search was made possible by a few other things. One was Obamacare, which gave me health insurance for the first time in my adult life. Another was my job where I teach by term, and so could take time off and return. Something I didn’t have then was savings to use while I wasn’t working; living hand-to-mouth on an arts teacher’s income for twenty years hadn’t allowed me to save. So as the search dragged on, I ran out of money pretty quickly for things like food, shelter, and medical expenses up to my deductible.
People I come from don’t ask for help openly. And I’m still embarrassed to tell this part of the story; I’d much prefer to leave it out. But again, I’ve promised you a true story, and this is the truth of what made the whole thing possible. In the early days of crowd-sourcing, when people were excited about the possibility of giving a little and changing someone’s life a lot, a friend suggested I set up a fundraiser. When I couldn’t make myself do that, she set it up for me. Another friend put my studio up for rent and managed it while I was away. And because of these friends, and former students, and former teachers, and colleagues and collaborators and family and strangers, and basically everyone I’ve ever loved who donated a little bit, I had just enough money to look until I found a doctor who let me keep my organs.
I also had a lot of love from these people on the way. Which was just as much of a miracle. I don’t imagine anyone knew about the big feelings of unlovability I was harboring during those years. At least, I hope they didn’t. But it was hard to keep feeling unlovable while people drew me pictures and sent songs and love notes. I’d open my phone in hosptial waiting rooms to find memes and jokes that made me laugh during some very un-funny moments. I was lonely sometimes during those 8 months, but I was never alone. These people accompanied me relentlessly, and unwaveringly loved me.
Even if I’d never found a way to keep my organs, or never come to understand why I was trying, I’d be grateful to them for that for the rest of my life.
Between hospital visits and hospital correspondence, I kept taking walks. Exploring the frozen towns I was in, I found books in Little Libraries that were perfect, and met strangers who are some of the most loving, wise people I’ve ever known. I met a doctor wearing medical scrubs and playing Leonard Cohen’s Hallelujah on a piano in a cafe I stepped into one day, and when she sat down next to me with tea later, we learned we had some common friends.
The woman who ran a boarding house I stayed in also ran a foot reflexology clinic, and she taught me about meridians, and gave me the first (and best!) foot massage of my life. I met a local angel named Ricky who ran the one-man cab-company that I took to and from appointments in one town. He was wise and funny, and almost always stopped to pick up others who called him from the hospital. He’d add them to our ride, saying anyone having to travel home from a hospital alone deserved a free ride. I stayed with gracious long-time friends in one town, and got to play and laugh with their two-year-old who was full of light and glee. In another city, I was lucky to stay with friends I’ve loved since high school and spent time with their amazing daughters.
And whenever I went to a new hospital in a new state, I traveled by train instead of plane. Mostly because train tickets are cheaper on short notice, and because being on a train for a few days saves a few nights expense in a hotel room. But also, because I love them. I love the long, slow, gently rocking trips through snowy mountains and rolling fields and canyons by winding rivers. And with appointments always days away, I had that time. So I sat and wrote and read and looked out windows and talked with strangers who I got seated with at dinner: heads of schools and journalists and miners and organizers and environmental scientists.
On a stretch from Seattle to Rochester, I met a cute programmer from San Francisco, and he and I made friends with a smart eight-year-old we found lurking in the corner of a sleeping car with his arms stretched out in front of him, wearing a slack-jawed expression and growling the words “Brains….” We both understood the game quickly and I yelled, “A Zombie! Run!” and the kid’s face lit up and he chased us all the way to the caboose, where we introduced ourselves smiling, shaking hands as much in introduction as in congratulations for a scene well played.
Later that day, all three of us kneeled by the wall-wide window of a viewing car as our train rocked slowly over the Mississippi. We sat in silence, taking in all its majesty, and making wishes, because that was a rule we made up: anytime you cross the Mississippi, you get to make a wish. I got to make a few wishes that winter.
In all those travels, I only ran out of sugar twice. Once at bedtime on a train, I realized I’d failed to buy dried fruit for my nighttime medicine, before the snack car closed. It was a position I’d never let myself be in before. But when I went back to my seat to think, I found a bag of sugared pecans, and a big, bright orange with a red bow on it, with a note from a couple I’d had lunch with that day. They hadn’t known about the insulinoma. It was just a gift, and it may have saved my life.
The only other time it happened I had arrived in Rochester on the night of a huge blizzard, and so couldn’t get to a grocery store. But the woman who owned the boarding house I stayed in there had (also without knowing my situation) also left a giant, bright, beautiful orange on the counter of my room, and it got me through the night.
There was so much more magic. And I want to give you every single moment of it in case it gives you any small part of the joy and hope it gave me. But somewhere during that journey, I came to reconsider that impulse. I began to understand that some of the awe-inspiring things happen to me are maybe for me to just have… first, at least. Before I give them away.
Towards the end of it all, I was staying in a dingy motel in Minnesota, a little bit losing my mind. The Mayo Clinic had been my last hope because they offered an experimental treatment that sounded great. But when I got there, they wouldn’t let me have it. Again, because I was “young and strong and fit for the standard of care.” My heart broke and my hope ran out. It was freezing in March, and I kind of froze, too. The bedbugs and black mold were all in that same town, so I moved from place to place, looking for the next surgeon.
When I stopped being able to think, my friend Jessica came and stayed with me for a week, and we colored in coloring books and watched bad movies and laughed, and took walks in the town that was entirely black and white in winter. We saw a murder of crows, probably 3,000-strong, like an ominous cloud taking over the sky. Her company helped me keep my head.
When she left, I reached out to the last guy, a “long-shot, hot-shot,” surgeon with a long waiting list, who a doctor friend said might let me keep my spleen if anybody would. I called to ask if I could speak with him by phone, because I only had money left for one more train ticket. If I traveled to him in California and found he wouldn’t do what I was looking for, I’d be stuck there without money to travel again. I was also just tired.
The woman I spoke with at his hospital… I think her name was Rose… said I’d have to come see him in person, which I expected. But she gave me her email address. And so I wrote him a letter, explaining my financial situation, and asking if he might call me, and asking her if she would give the letter to him. She said no.
The next day, I sent her another letter for him, and then the next, every day for a couple of weeks, each time asking him if he might help, and each time apologizing to her for writing.
I never heard back from her. So, I began to reckon that my only option was the organ-removing procedure. Still near the Mayo Clinic, I asked to meet with an endocrinologist there, to learn what life would be like without a spleen and half a pancreas.
This was where my reason for looking started to make sense.
At that appointment, three endocrinologists met me instead of one. They were all medical students, and moved like a cheery little band of elves, twinkly-eyed and white-coated and excited to talk. They said they’d never gotten to speak with a person about what life would be like without a spleen before they had it removed (because usually those are emergencies) and they seemed glad to have the chance. They educated me really well, and mostly said what I expected: that I’d be okay, and there might come a time where I’d need to take antibiotics or insulin, but otherwise, fine.
I took comfort in this. And then, just before they left the exam room, one of them paused and said, “Oh, and also! This probably won’t apply, but just last month, a many-decade study concluded, which shows there is a certain type of blood cancer — CLL — that looks to become hereditary if a person does not have their spleen.”
“What do you mean by hereditary?” I asked. He said, “Well, if a person in a family has Chronic Lymphocyte Leukemia, and their children have their spleens, then that cancer doesn’t seem to occur generationally. But, if that person’s son or daughter loses their spleen, then CLL is likely to occur in that child.”
“My dad has CLL,” I said.
He blinked and said, “Oh. Then you probably should not have your spleen removed.”
“I have been trying to keep it,” I said. “I just didn’t know why until now.”
The next few days are a bit of a blur. I finally understood why I’d been trying so hard to keep an organ everyone had been telling me was useless. And at the same time, reckoning that there wasn’t a way to keep it. I felt a strange combination of relief and resignation, and sunk into something like a weird, dreamy depression.
My mom generously flew to Rochester to stay with me. We watched the surreality of Trump running for president (for the first time) on TV, had barbeque delivered to our room, and she let me sleep-in in the mornings. I don’t remember much of that time, but I know that she restored the poles and watched over me. I am sure that she was love, and patience. And I imagine that she was scared, but she did not ask me to hold that for her.
After a few days, I resurfaced with some clarity, and made the choice to return to the surgeon near my friends to have the standard organ-removing procedure. I decided I’d rather have that than no surgery at all, which was a good thing. I was glad that I had gone looking for a way to keep my spleen, even if I hadn’t found it. And even though I finally knew why I had tried so hard, and how my life might be difficult without it, I felt peaceful knowing that I trusted myself, and that whatever would come, I’d tried my best.
The very moment that I opened my laptop to get tickets for the return trip, my phone rang. I answered, and a cheery voice that sounded most like my comedy friends said, “Janna!” I recognized him without knowing how, and said, “Doctor Fong!” And he said “Yes. Rose just gave me all of your messages. Do you have time to talk?”
I remember this phone call word-for-word, because it was one of those moments when you wake up inside your own life, and understand that everything is about to change. Here’s how it went:
Me: “Oh no! (laughing) She gave you ALL my messages?! That’s embarrassing. I had hoped she might just give you one.
Him: No no. It’s great! You are brave, and I’m proud of you. You trusted yourself and kept looking. Can I talk with you a bit about this, and then you can ask me any questions you have?
Me: (happy tears) Yes! I mean (calmer) yes, that sounds great.
Him: Okay, so here’s the thing. I imagine you have had a number of people tell you during this time that you don’t need your spleen. Is that correct?
Me: Yes. Everyone has said that.
Him: Well the thing is, that’s not entirely true. I mean you can be okay without it, yes. But doctors aren’t God. We didn’t make the body, and we are still finding out new things all the time about what it does. So, it is really good to keep as much of our healthy body parts as we can. I also imagine people have told you that this isn’t an option for you. Is that correct?
Me: Yes. Everyone has said that.
Him: That isn’t true either. Removing the insulinoma without taking out those organs is difficult — I’ll be honest with you, okay? — but it is certainly possible. I bring surgeons together from all over the world to learn and study with other surgeons who are on the leading edge of procedures that preserve bodily integrity. But I’ll tell you: even if this wasn’t my practice, I would do this for you. Because it’s what you want. Because that matters, too. It will be harder this way… difficult robotically. So instead of laparoscopy, I’ll be making an incision and doing the surgery open, so I can hold the pancreas in my hands and make sure we do it exactly right…”
At this point in the conversation, I’d drifted out into the hotel hallway, and was sitting on the soft hall carpet with tiny snowflake patterns on it, next to a window looking out onto the real snow falling softly. And I don’t really know how to say this, but in addition to being grateful for his knowledge, his kindness, and his patient explanation, I felt like I remembered Dr. Fong. Like he was part of my story… just, a part of it that hadn’t happened yet.
Him: “Okay so, great! What are your questions?
Me: Uh, I think for the first time I don’t have any. (laughing) Thank you. I… I’d really like to come see you if that’s okay.
Him: I’ll look forward to it. Let’s get you scheduled.”
And that was it. We scheduled an appointment for two weeks away, my mom flew home, I rented a car to drive back to Chicago where the most direct train for Los Angeles departed.
And my heart felt so open: unconflicted, light, and without any of the weighty resistance I felt to the standard procedure. The feeling of Yes was so different from the feeling of No. I was still sick, and still pretty scared, but I felt happy to be alive, for the first time in a long time. I felt hopeful.
And speaking of miracles, I’ll just tell you that on that drive, the first song I heard when I turned on the rental car radio was this silly, joyous, perfectly perfect thing. I’d never heard it before, but it started up from the very beginning when I turned on the radio. I drove and laughed and cried and sang and danced in my seat, in gratitude, and awe, on the last part of that journey to the City of Hope.
Dr. Yuman Fong is the Chair of the Department of Surgery at City of Hope, and Director of the Surgical Center for Innovation. That made me feel pretty great about being in his hands. But what made me feel even better was that he’s one of the most wide-awake, joyful, creative people I’ve ever met. That was not a requirement. But a very fun unexpected bonus.
In every interaction, before and after surgery, he treated me like a person. Almost like a friend. He taught me things and laughed with me. And he told me so many awe-inspiring stories. In my time knowing him, Dr. Fong showed me the gorgeous comic book he’s had published about superheroes fighting cancer, he’s talked giddily about rising before dawn to catch appearances of rare celestial events, and told me stories about archery, and art-making, and community gatherings and adventures around the world, and flying a rented blimp with his wife over the Pacific Ocean. None of his stories are full of as much joy as the stories about his wife: she is his dance partner, the love of his life, his co-parent to three amazing kids, and co-conspirator of so many past and future grand plans.
Which is all to say that Dr. Fong saved my life in more than one way. As a surgeon he healed my body. But while I knew him, he also seemed to be working just as hard to heal my spirit… or, to give back to me a sense that life is wonderful, and big, and possible. And, it worked. I left each of my visits with him filled with stories that made me feel like it’s good to be alive. For any of the people I may have tried to do that for, he was the first person who did that for me.
The place Dr. Fong works is just as magic as he is. And I’ll tell you just a bit about it here, with the hope that you’ll believe me that this lush little valley at the foot of the San Gabriel Mountains is a real place, in case you or someone you know needs a miracle in real life.
City of Hope is a renowned cancer treatment center. And while I call them magic, their hope isn’t pollyannaish, or based in magical thinking. Everyone there is squarely facing the fierceness of the foe they are up against, and their research is responsible for some of the most vital and widely available cures on the planet, which is why their hope is justified. There is a vital and humane unity of purpose among the kind people there, and a wild, historic legacy of global, grass-roots fundraising that has allowed them to do the independent research that’s led to these cures, while long refusing to turn people away for lack of funds.
When I got there in the spring of 2017, what stood out to me was a long line of trees, to which are attached an infinite rainbow of love-notes and prayers from the beloveds of people being helped there. When you walk past them, the notes make a soft whispery sound.
There was also a rose garden, and an art garden with acres of outdoor sculptures. And a museum, and a giant library where doctors and patients study side-by-side. And another garden holding statues from many different faiths. There’s a Japanese garden with a coy pond, and a gigantic surgery center with a 10-story banner on it celebrating the combining of Eastern and Western traditions in cancer treatment, and cottages in a meadow where people recover from surgery or stay during treatment, surrounded by enormous sycamore and jacaranda and live oak trees– sprawling and proud, like they know well that they are part of the healing work, too.
There’s a golden gate that has stood since the beginning, that’s made of these words “There is no profit in curing the body, if in the process we destroy the soul.”
I’m sharing these details because I’m not sure how else to convey the differentness of this place. It is like a strange oasis of human kindness… a portal into an alternative world we humans might have built if we had all made different choices along the way. But, real.
That tradition of independent research, and the frequent discovery of new cures, have continued at City of Hope since it’s founding over 100 years ago. And they’ve expanded to acquire Cancer Treatment Centers of America and The Lennar Foundation, to open multiple locations and become one of the largest cancer research and treatment organizations in the world.
Their tradition of not turning people away for lack of funds has continued too, even if it’s not much advertised. So, if you or a loved one needs help there but you don’t have the money, just call and let them know… and see what happens.
My first day at CoH, I sat with a chaplain in one of the gardens, and wept for the first time since the cabin in the woods. Maybe because I finally felt safe, I was reckoning with how tired I was, from the insulinoma, and from the search. I told her that I didn’t think I could handle surgery. I was afriad they put me to sleep, there wouldn’t be enough life-force in me to wake back up. I said I wished I could go somewhere to rest and get strong first. “Maybe you will rest and heal here,” she said. I laughed, “I don’t think so. A hospital isn’t a place for rest and healing.” “I don’t know…” she said, “then maybe it isn’t just a hospital. Maybe this is a little valley at the foot of the San Gabriel Mountains, full of love and old trees, that just happens to have a hospital on it.”
Dr. Fong prepared me well for surgery, telling me it was going to be like being attacked by a saber-toothed tiger. “Not, a regular tiger?” I asked, delighted by his honesty. “Nope,” he said, “Saber-toothed. But worth it. It will likely save your life. But let’s just be clear that any surgery is a real assault on the body, and this is a big one. So your body will naturally have to heal from this, which will take some time.” That he told me the truth about this helped me get through the hardest moments of recovery.
Three days after the operation, when I was still hooked up to tubes and cords, he came to visit me. (He probably came earlier, too, but I was on drugs and don’t remember.) “Hello! Let’s get up!” he smiled. “Um, I can’t.” I said. “Yes you can, okay? Let’s do it.” So I got up, and he said, “Here, stand over against this wall.” I moved slowly, hunched over, connected to machines, with all the mending tissue gathering fast around the place where my abdomen had been sliced open vertically, swiftly knitting itself back together and pulling me forward into a posture like a permanently clenched fist.
“This will hurt,” he said, “But you’ll do it every day because it’s really important.” And with my back against the wall and my spine curled forward, he gently placed his hands on my shoulders and said “Deep breath,” and then pushed slowly, slowly, slowly, until I was standing upright. Tears poured down my face and I’m sure I yelled, and he stayed with me, seeming equally comfortable with the wide-awake-human part of healing, as with the unconscious-human surgery part.
“Yep, it’ll really hurt,” he said, “And that’s okay. Every day, three times a day, you’ll do it. Against a wall, or put your arms out in a doorway and lean forward. Stretch this whoooole area open. You’ll thank me later.”
He gently let go and smiled, “What are your plans for this weekend?” I laughed hobbling back to the bed and said, “Um, sitting in this bed. How about you?” “When you’re up and walking, get to the museums! There’s a beautiful botanical garden close by! Me, I’m heading San Francisco. It’s so wonderful there. We’re going to a conference with a cure that we want to get pushed through...”
A few days later, I moved out of the hospital and into the cottages in the meadow. They let me stay there for free. And it was, just like the Chaplain said, a place to heal and finally rest. I was there for 6 weeks until they removed the drain from my abdomen. Those days were full of dappley sunlight, and time, and opiates, and remarkable pain… pain that I wish I didn’t know a human body was capable of. But it was a profound gift to have a safe place to notice my own body’s intrinsic trajectory toward life, and to let all my energy and attention and action be in service of that healing.
I had to be slow and thoughtful, about each thing I ate (so that I didn’t get pancreatitis, which was awful), and about how to start moving and walking again, to push but not harm myself, and about every pill I took and so that I could bear the pain but not get addicted. Time went slowly, and every choice mattered and in that environment, I learned to take things in that sustained me, and only give out what was sustainable. Since those weeks in the cottage, I have never lived like I used to: exhausting and depleting and running myself down and giving everything away. Since then, I have much better understood the necessity of balance and sustenance.
My mom stayed in the cottage with me the first few weeks, and helped me cook, helped me sit up in the night to go to the bathroom, change bandages and empty drain bags. After she left, there were some complications I’ll spare you, and some amazing friends helped me through those. Anne and Monte, Lauren and Erin and Charlie, Windy and Danielle. I am forever grateful.
When I got stronger, I’d go out to some rehab equipment in the grass next to the cottages. There was a device I could use for the stretch Dr. Fong taught me. It was a bent bar painted bright blue, reaching from the ground up to about 7 feet and back down– like a doorway that I could step through, grab the bars, and leave my arms and feet behind me to lean forward and stretch my abdomen, like a mermaid on a ship’s bough.
The first day I used the archway, I rested in that stretch for a while, and closed my eyes feeling the sun. That day, for the first time, the pain was bearable, and I just breathed. I realized I was on the other side: I found someone who removed the tumor but let me keep my spleen, and I’d come through the surgery, and hopefully the worst of recovery. My mind scanned back over the whole journey… from the diagnosis in Chicago to the woods and the peacock and the train and the winter and the family and friends and all the towns and hospitals and the love that carried me through.
Then, I had the feeling someone was watching me. So I opened my eyes, and in front of me, about 15 feet away, was a shimmering blue peacock, with its fan fully spread out, mirroring me.
That was the first day he came, and for the next few weeks he was around. Lounging in tree branches, poised on the corners of building roofs, posing on boulders, always seemingly fully aware of his own apparition and the joy it brought people. The ladies in the cottage office gave the name Hope — of course after City of Hope, but also, they said, for this poem:
Hope (is the thing with feathers)
by Emily Dickenson
“Hope” is the thing with feathers —
That perches in the soul -
And sings the tune without the words -
And never stops — at all -
And sweetest — in the Gale — is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet — never — in Extremity,
It asked a crumb — of me.
My last week in the meadow, the peacock wasn’t around. When I asked the office ladies about him, they told me an awe-inspiring story about his adventures. They said a friend of theirs at the front desk in the Surgery Center said that two days ago, bright and early, Hope crossed the street at the busiest part of the hospital complex, where all the traffic loops in to drop people off and pick them up.
He navigated past the taxicabs and wheelchairs at the entrance to the Surgery Center, and walked up to the sliding glass doors where he fluffed his tail feathers out into a full fan, and waited for the doors to open for him. When they did, he walked, slowly, in full peacock splendor, past the front desk and into the waiting room where people were sitting, waiting to be called in for their operations. And then, he just hung out with them there for a while, in the simple, obvious fact of his own miraculousness.
Can you even imagine? To have traveled to a far away place that offers help… to be up early, hungry, scared, and half asleep at the crack of dawn, sitting in the surgery waiting room, wondering quietly if you’ll wake up after the operation, and if you do, what your life and your body will be like on the other side. And then…
I’m thinking about all of this now, because last week, I returned to City of Hope for a seven-year follow-up, and Dr. Fong and his wife invited me to stay with them while I was there. Like, at their house. Which is just… so… human, and so kind, and so different from what can come to feel normal inside medical systems. After a little shyness and hesitating, I said yes, and stayed with them for a couple days. And it was the most fun I’ve had in a long time. Probably one of the happiest times of my life. We stayed up late talking, and laughed a lot. Their house is full of joyful photos and beautiful art and amazing objects, and every piece has an excellent story behind it.
One night, he showed me a knife that he made. If I remember right, it sat in a little glass case with light shining on it. When he picked it up and held it, I looked quietly at it, and thought of how a knife in his hands had cut into my body, and removed a tumor that was killing me. Then he confided that this particular knife is “for when the Zombies come”.
I laughed. But he didn’t laugh with me this time. Trying to figure him out, I asked playfully if he was really scared of Zombies, and he said quietly, seriously, “Oh I’m not scared. I’m just ready.” And then, it occurred: all of the real zombies he kills every day. All the living tissue that isn’t life anymore, but that’s sleep-walking around, devouring people. And for a second, I understood I was in the presence of a real life superhero.
I didn’t see Hope when I visited the campus last week. I asked a few people about him, and those who’d been there long enough to remember the peacock, said they hadn’t seen him in a few years. So I gave up looking and went to the records office to see if I could find some of the people who got me through that time seven years ago, like the chaplain who let me cry on her shoulder, and the social worker who let me sit in her quilt-covered rocking chair, and the anesthesiologist who– when I whispered to him that I was scared that if he put me to sleep I wouldn’t wake up– placed a tiny bottle of holy water in my hand, and then made sure it was still there when I did.
I thought I might find some of them just to say thanks. And the clerk in the records office was kind, but she seemed tired, like she had already had a long day by noon. While she was looking up those people’s names on my chart, I noticed a feather peeking out on her foot, and I asked if she’d be comfortable showing me her tattoo, and she rolled up her pant leg…
I asked her if she had known Hope, and she said no, that she hadn’t worked there that long. So I asked if she’d like to hear the story about him at the Surgery Center, and she said yes. And so I told her, and her whole face lit up. “WHAT!” She said, “No way!…”
