The Sky

One morning in Minnesota, during a liminal, dawn-cracking hour between sleeps, I woke with a clear understanding. This was about 4 months into a search for a surgeon who could remove an insulinoma from my pancreas, without removing whole or large parts of my otherwise healthy organs. The surgeons I had met so far had told me that the only way to remove the small, non-cancerous but dangerous tumor was to remove half of my pancreas and all of my spleen. Because of it's location, and the difficulty of operating on the pancreas, each doctor said it wasn't possible to remove it any other way. I'd gone looking for alternatives anyway, feeling that I should, and hoping that there still might be a way to keep those healthy parts. Through online research, and asking questions of doctors who were friends and friends of friends, I found a few slim possibilities. Each surgeon wanted me to visit in person before they'd tell me if they could do what I was hoping for, and once I traveled to a new state to see them, each, in turn, offered me the standard organ-removing procedure. (Two in a million people develop insulinomas, so most pancreas surgeons have never operated on even one. For this reason, finding a surgeon who offered a skillful alternative to the standard procedure was seeming unlikely.)

After four months and four states of hospital visits, I was in the middle of winter in the middle of Minnesota, having exhausted the options I'd found. As I write this, I remember the hospital in California where I eventually found the help I hoped for, and I am filled with joy. Which is remarkable. I am filled with joy at remembering a hospital.

But on that blizzardy morning in Rochester, I didn't know that part of the story yet. I was staying in a boarding house in a town where I didn't know anyone, having traveled to The Mayo Clinic to meet a surgeon who offered a new, experimental procedure, and who declined to work with me once I arrived because I was a "viable candidate" for the standard-of-care (organ removing) surgery. After a couple days of tired crying, I started new research, made more calls, mailed a pound of medical records to two different surgeons in LA, and waited to hear from either of them.

At that time I was waking up a few times each night to eat snacks so that I didn't have seizures from low blood sugar, and taking long, skittles-spiked walks in deep snow and in the eerie underground tunnel systems of Rochester, which connect miles of hotels and hospitals and restaurants and gift shops. Some days I visited a furniture store that had heaps of mass-produced rustic bohemian-looking furniture stacked like Christmas, and set myself adrift on overstuffed chestnut pleather couches, feeling like a buoy in a sea of overstock.com, gazing at fake Tiffany lamps, sky blue fractured glass spheres, and violet pashmina throws. When I came too close to losing my mind, my friend Jessica came to visit me for two days, to laugh and take walks and watch movies. We watched The Davinci Code and Zoolander 2 (which are oddly enough the same story). One day as we walked through the grey neighborhood streets of Rochester, the sky above us filled with ten-thousand crows.

I kept waiting to hear back from California, because I had the feeling that it was important to keep looking for a way to keep those organs. Even though the Mayo Clinic, and everywhere else, had told me that I didn't need them. It wasn't that I didn't trust them, or that I felt they were lying to me. I had profound respect for these surgeons. They are people with knowledge and experience and skills that are worlds-- universes beyond mine. I also liked most of them as human beings. Some of them were loving, wise, and incredible individuals. Which made it all the more confusing when I didn't feel like what they were saying was true. Maybe they didn't know. I didn't know. I just had a strong, deep feeling, and I chose to listen to that.

Even if I didn't find what I was looking for, I wanted to look. I knew there was a big possibility that I wouldn't find an alternative to the standard surgery. And if that turned out to be my only option, and my health suffered later because of it, I'd never regret not having tried to keep my healthy organs.

While I was waiting in Rochester to hear back from the surgeons in California, I asked if I might have a visit with an endocrinologist at Mayo. Just to learn what life would be like without those organs, if I ultimately found no alternative. I learned from them some basic things I'd already known, like about the regular booster shots and more frequent antibiotics. But I also learned that day that a spleen protects against a particular type of blood cancer that is not hereditary if a person has a spleen, but that becomes hereditary if a spleen is removed. And that blood cancer is a condition that my father has.

No doctor had told me about that consequence of having my spleen removed until that moment. No-one had even asked about that condition in my family. Maybe they didn't know about the connection. The Mayo doctor said it was very new information. But in hearing that news, I reflected on the sadness of the fact that some of those doctors had become frustrated, and even angry at me-- shaming-- for wanting to find a way to keep my spleen.

*

There are systems we rely on. Of education, health care, policing, infrastructure, communication, finance, accreditation, navigation, maintenance and repair, business and law... all of which are meant to protect and serve us. And in order for these systems to run smoothly, we not only agree to follow a number of reasonable rules, but we agree to give those systems a measure of authority. This means that we let representatives of these systems determine things about us and for us. And a lot of the things that we let them decide are important. Systems determine whether we are free to move in various spaces, are qualified for things we'd like to do, are eligible for aid when we need it, are valid in our opinions, entitled to forgiveness, allowed to see family members, live in certain areas, apply for work, receive health care, use birth control, drive, vote, get married, and go to college. We also give these systems the authority to officially pronounce that an individual is sane or insane, healthy or unhealthy, free or imprisoned. 

That's a lot of authority. But we give systems authority over us in exchange for the services and protections we want them to provide. Sometimes, those systems serve to harm rather than help people. And when they do, people work to implement controls that prevent those abuses. We do that by heeding our own personal sense of what feels Right, above what a system tells us is Right. Trusting that personal sense allows people to continue to prune and reform systems in ways that prevent abuses of the power we give them. So when systems tell us that people of different skin color or orientation can't marry, or that housewives should have their uteruses removed or their brains stabbed to cure "hysteria", or that workers should labor inhumane hours for shameful wages, or that police should be able to kill unarmed black men with impunity, or that people of a certain religion have to be put on a national registry... our internal sense of what is Right supersedes what a system tells us is Right, and we stand up to require correction. Which is good and necessary for society to grow in healthy ways. 

To me then, it is a great tragedy when systems begin to deliver the message to individuals that we should rely entirely upon their authority, and disregard our own internal moral compasses. When any person begins to believe that they are wrong, or irrational or shameful or disrespectful, because they feel differently about something than a system does, I think this is a bad direction.

I was starting to feel a little bit of that in Rochester. Until that point, I'd been able to hear and honor the advice of experts, and gently lay down their personal opinions about me. But four states in, the accumulated judgements started to feel weighty. Dismissal and disrespect from people I admired in positions of high status was hard not to internalize. I began to absorb the judgement that I was wrong, bad, and crazy, for looking.

To help me, my friend M composed a pretty metaphor. He compared my search for the surgical procedure I wanted, to a search for a green dress. He imagined me walking in to different shops and asking if they had one. And instead of shop keepers saying something that honored me, like, "I'm sorry, we don't have green dresses, but I might know where you can find one," they said dismissive and disrespectful things like, "You don't need a green dress," and "What makes you think you need a green dress?” “Trust me, you'll be fine without one." "Please explain why you're asking for a green dress." "Green dresses don't exist." And "How did you learn the words 'Green Dress?'" and "Have you ever heard of any person successfully finding a green dress?!" and "I'm sorry, but you can't ask us if we make green dresses over the phone. You have to travel 1,000 miles to ask us in person," and even, "Of course I could make a green dress. It's just not worth the trouble to make one for you."

The silliness of this made me laugh, which was good. Because if you substitute the organ-saving procedure I was looking for, for the words "green dress", then these are all things I had been told. I knew it was never a doctor's job to validate me. But the invalidation of people I respected grew taxing over time.

So that morning in Minnesota, I was getting tired. Waiting to hear back from surgeons in LA, staying put, running out of money, unable to travel home because my apartment was being sublet. I also only had enough money left for one more trip... either out to California if a surgeon there said yes, or back to Portland if they said no. 

Which is why it was nice to wake up in that snowy twilight with some peace. A sense came with that grey dawn that was just this: that whatever I found, it was reasonable to have gone looking for a way to keep my own body. It was okay that I trusted myself. 

That was pretty much the whole thing. 

*

The story of finding Dr. Fong (the surgeon in LA who's voice reached out a couple of weeks later over the phone to reassure me that what I hoped for was possible, and that he traveled the world teaching people how to do it, and that I do, in fact, need those organs and should keep them if I can) and the story of having surgery and then healing in an incredible place called City of Hope, are shared in previous posts on this blog. Right now, I’m continuing rehab in Tucson where my family is, before returning to Chicago to teach in late August. The surgery was big, and it went well, and I recovered on the hospital campus for a few weeks (most recent posts before this one tell a little more). After doing rehab at City of Hope for a little bit, it made sense for me to come here where I have a stable place to stay with family and continue rehab remotely. The rehab doctors gave me a clipboard of exercises and charts to track how things should change, and taught me to monitor my own progress and push myself. There are three parts to rehab each day, which all together last about three hours. It's not easy, but I like it. I like doing something that I can see brings improvement. And also, I like that it is a forced period of time every day where I get to pay attention to being in a body. 

The part I like most is swimming. This part is meant to heal the damage done to my diaphragm nerve when the drain was removed. The pain from the drain removal was life-changing, and lasted a long time (details if you want). When I first started swimming three weeks ago, it was incredibly painful just to stand shoulders-deep in the water. And so the purpose of the time is just to breathe, swim, hold my breath, and be in the water. Over the last few weeks I’ve paid attention to what kind of pain feels healing and what feels hurtful, and I've pushed myself accordingly. And now when I swim it only hurts a little bit, which is great.

My favorite thing though, is that it doesn't matter how I swim. Just that I swim. So instead of doing a bunch of formalized laps, I just let this be a time where I have fun. The nicest part of my day right now is floating on my back while I look up at a deep blue dream of a southern Arizona sky, filled with cumulus cloud cities and aberrant shafts of sunbeam splitting out in all directions. Dragonflies dart across my view from time to time, and there are lots of butterflies up high. (I never knew that butterflies flew so high.) I also love the part when I am underwater, swimming like no one ever taught me how. I do know how to freestyle and breast-stroke and back-stroke. But I don’t enjoy any of that, so I'm not doing it.

The way of swimming that makes me happiest starts with a little mermaid-like drive from inside the water already, arching up over the surface and then back down deeper, with my back and then butt and then toes skimming the surface, as I sprout into something more like a tadpole, thrilling that it suddenly has new froggy legs to wiggle itself down into the darker blue, and then finally morphing into something like a small underwater tornado in one of those science museums, spinning up toward the surface, full of light and bubbles. That's how I swim. And I have to say it seems a little ridiculous to do anything more regimented inside a medium that freely allows you to fly around like a bird and do somersaults above the ground.

Sometimes I let all the air out of my lungs and sink to the bottom and listen to the quiet sounds. Sometimes I lie face down on the surface of the water like the letter X or a dead woman, and release every muscle in my body except my fingers, which I use like small flippers to give a little occasional flick to propel myself just slightly through the substance. I watched a turtle do this once in the Japanese Garden at City of Hope... just float with an occasional flick... and I wanted to try it. It's pretty good.

It has been cool to listen to my body and let it guide me. And really cool to watch myself healing from doing something joyful. 

*

I am smart enough or old enough to know that anytime the events of my life seem to support a thesis, or seem to be demonstrable proof of a formula that I started out with, there is more to be revealed. I am suspicious of neat little bows on stories, and also pretty superstitious that any positive conclusion is just an open invitation for something to come along and contradict it. When I notice myself attempting to glean from all experience some kind of Universal Truth, I slow down. Even though sometimes, there are things that I notice by watching that do seem broadly applicable. When that is the case, I am careful.

I wasn’t raised with any religion, but a handful of people in my extended family have various personal dogmas that they are just as urgent to impose upon each other as anyone ringing the doorbell with religious fliers. These are smart people who I love and respect, who are either fiercely religious, fiercely athiest, or fiercely… kind of, alternative in their spirituality or world view, but who have in common a wish to persuade others into thinking like they think. To me, this investment in influencing another person’s thinking—even if it is in a positive direction— may not be as much a sign of the importance of the message, as of an individual’s wish to either direct those around them, or win their love by saving them. And either way it feels hard.

As an improv teacher, absolutism is something it seems like we should be wary of. Because we have an job in which we help people discover the reliable wonders and broad application of a few basic creative principles. The games we create and pass along are literally designed to let people experience some very simple, basic truths; tenets of action and relationship, which, over and over again through decades, have proven to release generations of people into joy, freedom, and empowerment. So it seems like a field that could trecherously incline us toward dogma. Especially when we witness repeatedly that “Art gets better when you _____. And life gets better when you ____.” 

But I don't see a lot of dogmatic personalities around me teaching improv. And maybe this is because the principles themselves are about being willing to not know. Maybe they prevent us from dogmatizing them because they are about wonder and curiosity, about generosity and support of other people. They require a willingness to be new, and to make mistakes, and to keep discovering and learning and paying attention.

But there is an idea that I do want to share about. It's a thing I’ve studied, experimented with, taught, written about, told stories on, made up games for, and even gave a sermon on a few years ago. It's basically a subject that's had my attention since I was a young person, and that was especially alive with me through this search and recovery process. And because it feels so important, I feel extra cautious about how to talk about it. I want there to be a way to talk about it that isn't dogmatic or authoritative. I just want to talk about it as something I have noticed, and that I'm interested in, have come to find some good in. I definitely don't mean to impose it. I just want to name it as a joy, in the same way I have set out to honestly name pain, and anger, and fear during this journey.

This thing has to do with a correlation that I notice between a person (me, friends of mine, students), trusting and following an internal sense of direction, and life becoming healthier, more illuminated, and more fulfilling. Whether it's over an extended period of time, or just for an hour. I notice that when we decide to trust an inexplicable internal pull, we sometimes find things (experiences, people, opportunities, situations) that are more perfectly suited to us, and more wonderful, than could have been found through a systematic, strategic process. I don't see this as any sort of magic formula for granting wishes or solving problems. I just notice it as an action that correlates to improvement.

I think there is a resource inside of us that is capable of sound navigation. And I think that resource is not capturable, commodify-able or capitalizable. I think it's a natural, wild part of us that can't be codified or edified, but is an inherent, innate thing that we come with. It might be the part that was awake and emotionally responsive as a child. If so, we may remember it well, or only vaguely, or not at all. And even if there is some grieving to do for the times we had to silence it or lay it down, I think it is still alive, and available for consultation.

I almost never hear this resource talked about. Some people occasionally use words like spirit or soul or essential self or inner child or creative spark or internal compass or higher knowing. I'm sure all of these are fine. But I personally struggle to find words that fit. The best I can do is to say it is a thing that we might wordlessly remember. Maybe it's the part of you that once felt the sun on your eight-year-old arm like it was love, one long afternoon on the front porch. Or maybe it is the thing you feel in dreams of flying. It could be the thing that feels like home, wherever you are in the world. It might be the part that is curious and joyful and longing and angry and astonished and heartbroken and gentle. It might be the part that feels and wants things. Religion and science both make heroic and beautiful attempts to explain what our essential life-force is and where it comes from, and any of them may be right. Meanwhile, the thing remains.

I've come to notice that this wordless part directs me through joy. Though simple feelings of Yes and No. Sometimes it leads me through a feeling of 'remembering' a place, or a person, or an action as part of my life story, even before I've experienced it. I've noticed that when I listen to that feeling, in exploring, creating, and choosing, opportunities arrive, healthier balances restore, and life becomes brighter.

*

In 2005 I made up a game called Intuitive Treasure Hunter that was meant to give people a stronger relationship with this innate knowing. The game is played in small teams on the grid of the world, anywhere that it’s safe to explore. I made it up for a bunch of awesome middle school kids who I wanted to see retain open their access to their creative spontaneity-- past the invisible gatekeepers of adolescence, and successfully into their adulthoods. 

The game's rules are clear and simple, but not easy. And it definitely has a life of it's own. The game is good, and it is rock-solid. Meaning that it serves to give a gift to anyone who plays it. The gift isn't always or ever what someone wants or expects. But it is always valuable, sometimes upsetting, and often stunning in its beauty and relevance. 

I've shared this game with teenagers, kids and adults over the last 10 years. And I hope to share it more. Last week, iO sent out an open invitation to the improv community in Chicago to meet and play Intuitive Treasure Hunter in Chicago to kick off the Improv Intensives. I was surprised at first as I hadn't known they were doing it. But I was delighted to see they were. I've trusted Matt Higbee with teaching the game, and he is great with it, and sweet about giving me credit when he teaches it, (which I always do too, when teaching a game made by Messing, or Uhlir, or Shotts or Lindsey Hailey, or anyone. Games belong to all of us and are meant to be shared widely. And the people who make them are also artists who devote great care and time to the endeavour, so acknowledging them is great!). The photos and stories and videos of the game that came back over social media in the next couple of days were amazing. It looked like 100 people played, and folks were expressing gratitude and sharing stories, and it reminded me again of the value of the game. Which makes me want to share it more widely. 

Also, this whole medical journey was really one very long, very difficult game of Intuitive Treasure Hunter. I was looking for something, and decided to honor an internal sense of direction. Even when I was advised not to. And my "treasure" was not just the lessons that I learned along the way, but a thing that I found towards the end. City of Hope and Dr. Fong and the generous skill and gentle wonder there, were more healing than anything I ever expected to find. And as much as I hate bows on things, the true fact is, I wouldn’t have found them if I hadn't trusted my feeling. I would not have found Dr. Fong if I'd believed a system when it told me I was bad or wrong for looking.

I am also aware that I might well have trusted the feeling to look, and then never found anything but the standard procedure. I knew every day that I researched and traveled and took more tests and forwarded records and waited for replies, that I might not find a way to keep my organs. But it seemed necessary to follow my feeling, whatever the outcome was.

And doing that made my days feel different. Some parts of this journey were actually very beautiful, and some parts were hard. Even during the hard parts-- undergoing tests at different hospitals, and feeling sick, and staying in places with bed bugs and mold, and not always being treated respectfully-- I felt a strange peace that came with trusting my life. Early in the search I started working towards that. In Portland, I began challenging my own internalized oppression; watching the silent but deadly part of my brain that learned years ago to tell me that everything I naturally think, feel, and do, is wrong, even as I am thinking, feeling and doing it. I began looking at my natural emotions as valuable & appropriate. This blog in fact started as a record of accepting the feelings I had come to be ashamed of: rage, fear, sorrow, ambivalence about fighting for my life, tiredness. I learned to join myself where I was, and to treat both my pain and joy as guides. By honoring my life, and letting it lead, every day felt like mine. I met incredible people, and I saw wonderful things and even had joyful experiences because my life was mine. And even through the worst parts, I had an underlying sense of being held, or loved, like the sun on my own eight-year-old arm.

*

This time away from Chicago feels really long. And also really short. After almost 9 months total of looking, waiting for surgery, having it, and recovering, I don’t feel homesick anymore… for anywhere. I feel a love for every place I have been, and feel like I could live in any of those places because of the goodness in the people and the land. Except maybe for Rochester... but not for any lack of goodness! My time in winter there was just too hard.

I definitely look forward to being back in Chicago. Every place I have been has served to remind me how totally remarkable Chicago is. You guys who are there; know that we're right about how unique that place is. The level of creative vitality and productivity, the inclusiveness and welcome, the depth and breadth of friendships, the industriousness of people, the diversity of community, the balance of high bar and open entry… it’s just not happening like that yet in other places. Take advantage of that magic. Share the best of what you have. From Chicago, your ideas grow into movements that effect the whole world.

*

I used to think I had made up the sky in Tucson. That my childhood memory had glorified and heightened it. I’d tell people in college or at early jobs in faraway states, that the clouds in Tucson were like cities. Cakes and boats and mountains adrift across a million miles wide and a hundred miles high. I’d tell people the sunsets lasted for an hour and a half, and splashed changing luminescent colors across the whole canvas of the sky, horizon to horizon—instead of just happening low in the west, like sunsets in most other places I lived. I told people we sometimes had a rainbow-a-day during monsoon season. And that the same season would hold some days where entire oceans hung upside down and churning above our heads; cobalt blue and ocean-grey green; bodies of water that couldn't possibly remain suspended in air until, all at once, the water would fall in torrents like waterfalls, filling up the streets like rivers. I told people that rain drops were warm, and the size of eggs breaking on sidewalks when they finally fell. I told people that when the sunset in the west reflected off a dark storm front in the east, the desert looked more like an underwater reef than land; every cactus and waxy glowing flower lit up technicolor in the late golden light. I tell people that the desert I grew up in is magic.

Being here again in August, fortunately, the month I was born here, and the month that the rains come, it turns out that all of that was entirely true. The sky is just exactly like that. 

Pain

It feels good to write again. I couldn't while I was in post-surgery pain. There are times when you just move through things, without any wish to describe them. I've felt an obligation to keep folks posted during this time, and I tried to with a few emails to family and nearby friends. But in as much pain as I was after pancreas surgery, I was not blog-worthy. All of my attention was on moving through each moment. Also, opiates make it hard to think.

I like blogging. But stopping, I realized I'd been harboring the illusion of an audience to whom I owe a performance of this experience. Something similar maybe to a thing I see in friends who blog or post a lot, when they've come to imagine their audiences. Social media is a fine connector. It can also foster a feeling of imaginary responsibility to report our lives to everyone we know. I notice this especially when one of us makes a post just to say we will be taking a break from posting for a while... as if we're explaining our absence from the stage in a packed theater. When we start thinking that everyone in our digital network is waiting to be entertained by us, we've entered a realm of delusion. Everyone is living their lives. No one is waiting to be entertained. I reminded myself of that when I got nervous about a long stretch without making an update.

I was told to expect a lot of pain after open pancreas surgery, and that it might last a long time. Hospitals talk about pain along a spectrum. They ask you to give it numbers, and for about three weeks after surgery, I was between 5 and 6. You are supposed to take enough drugs to keep the numbers lower than that, but opiates made my chin fall to my chest and dream while I was awake, and since I was supposed to be moving around to recover, they advised smaller doses. That meant I was in some pain. And being in it required me to be very present. For a while, every thing I did was all I was doing. When I was figuring out how to walk upright again, I was walking. When I was stretching the surgery site, I was stretching. When I was starting to eat again, I was eating. When I was moving from lying down to sitting up, that is what I was doing. Some days, it was too painful to sit, stand, or lie down, and so I kept moving gently from one shape to the next, responding to any new need for change. There wasn't energy left for reporting or describing the experience.

It was good for me to stop describing and just be. Walking outside every day, I remembered how to be with the light and the wind and the grass and the leaf shadows and the pain and love, and just have all that, without wrapping it into something pretty to give someone else. I remembered that it is maybe enough for me to experience my life, without having to present it publicly.

It is also true, that beyond the imagined pressure to report, I love to share experience. Things happen to me that I find inspiring and catalystic, and my joy in art has always been sharing them. And so much has happened during the time while I wasn't writing... things astounding and beautiful... that I've started to feel like my arms are piling up with gifts I want to give other people, but I couldn't give them because I couldn't write. I've wondered what I could finally make out of all of this experience, and I shared this question with my friend Erin the other day. She answered, fast and direct, "You make your life out of it. They are your experiences. Let them make you." A small, haunty part of me has believed that being made by my own life experiences is selfish. That part of me had to be broken, and pain is what broke it.

Flying

It seems like surgery is something people have as a matter of course in our culture now. Some part isn't working and so we get cut open to have it repaired. Surgery can be a radical, life-improving, and life-saving. A lot of people even have elective surgery. I don't know many people who opt not to have it when they can. I also don't see a lot of people talking openly about their experience of surgery. Their recovery, or their fear, or the pain, or the experience of having their own body sliced apart while they are drugged and unable able to remember.

I don't know if this is because surgery doesn't faze people, or if they just pretend that it doesn't. It definitely fazed me. I feel similarly about flying in airplanes. Some people travel 30,000 feet above the earth, and never look out the window. They look forward, reading a book, acting like they're on a bus. I think that if there was more reckoning with the reality of the situation of being that high above the ground, there would be more tears, more awe, more fear, gratitude and astonished wonder. Deeper friendships would be made, more strangers hands would be held, more profound conversations would happen. Bullshit problems would be put into perspective, and things that don't serve us anymore would be let go of 7 miles in the sky. I only fly when I'm prepared for that kind of emotional ordeal, because I can't help but notice what is happening. I suppose I related to surgery like I relate to flying. It felt big to me to be put to sleep, to have my abdomen cut open, and my organs sliced apart.

I was informed at a follow-up appointment the other day that my insulinoma was life-threatening if it hadn't been surgically removed. It's danger is different from the way cancer threatens a life... insulinomas are benign, not malignant, but they create a dangerous endocrine/hormone/blood sugar imbalance that can lead to death. This is something I'd gleaned from things I was told along the way, and something that I felt clearly in my body, too. But when you have something inside you that can kill you, and you're doing your best to find help for it, it doesn't really help to think about that all the time. Sometimes healing happens without medical assistance, and sometimes there are different approaches. Maybe some alternative healing modality could have helped me if I had immersed myself in it whole-heartedly. Or a new, less-invasive medical treatment would have come along if I had waited a few more years. But I felt that surgery was the right thing to do. The way the insulinoma effects energy, I didn't have enough of it to put towards a more rigorous healing process, or to wait around a few more years. I needed help at the time that I got it, and I am very grateful for it. Surgery with Dr. Fong seemed right, and it felt like a part of my history before it happened.

Dr. Fong talked about the procedure in a way that both informed and prepared me for what was to come, but didn't terrify me. He talked about it as a necessary intervention, and one that would help greatly. He told me frankly that it would be traumatic; that open organ surgery was something like being attacked by a saber-toothed tiger (not just any tiger). That important parts of me would be wounded, and that during the healing process I would feel a lot of pain. That for many weeks afterward, I might also feel cold, and very tired, and not hungry, and that all this was normal, as my body would be using all of it's energy to heal and repair. This made sense to me, and knowing it comforted me later when I felt all those things in the weeks that came.

After

When I was first out of surgery, my eyes frightened me. I hadn't looked in a mirror for 10 days by the time I passed one in the bathroom and looked up. I looked different, but not just in the way of having bed-hair and pale skin. My face looked like a tiki; long and hard and stoic, and my eyes looked scary and far away. Like they had seen something that I could not remember. Looking at my reflection was like looking at someone else. Someone who had experienced something traumatic that I couldn't understand.

By the time I looked in the mirror, I'd been in the hospital for 5 days, and in the recovery area for another five, on a ton of pain medication, not sleeping, and with the most pain I'd ever experienced in my life. I was hunched over because the fascia around the surgery site was constricting, and it pulled me into a forward arc like a willow tree. I was starting over again with a lot of things. I was relearning how to eat, how to breathe, how to poop, how to pee, how to cough, how to walk upright, how to sit down and get back up, and how to sleep.

I had one moment of remembering the surgery itself. I think. A couple of weeks after it happened. It was a quick, silent flash with a perspective of laying on my back and looking upward, surrounded and leaned over by dark figures above me with light behind them. The image was dark and bright, like an impression burned by a bright flash. It came as I was falling asleep one night, and I politely said no thank you and it faded away. 

I woke up from surgery with a scar down my middle, from about the center of my breastbone to just above my belly button. For a while, as the layers of tissue were healing, I didn't feel myself as a whole, but as two halves. Two separate pieces. Not wanting my fear or disgust, the scar didn't want to be seen by me for a few days, so I let it heal in privacy for a while. When I finally saw it, I was proud of it. It marks the site of a heroic rescue. And the effort of its mending feels like love and courage. I marvel at it. 

I also woke up with a drain in me. A soft rubber-like tube that left a hole in the right side of my abdomen and led to a drain bag that I wore strapped to my thigh like a sexy, sexy garter belt for 5 weeks. The drain was there because I had a pancreatic leak after the surgery. This is a very sad thing to experience in a body. And it can be a dangerous thing, which is why the drain is put in place: to  catch and remove leaking digestive acid that can harm the other organs (Dr. Fong says, "Don't call it acid! Call it juice! That's way less upsetting."). A bile leak is unfortunately a common thing after a pancreas operation. Pancreases are apparently delicate creatures that do not like to be touched, much less sliced up, and they take a long time to get over it. The leak in mine felt like my pancreas was weeping about being sliced, and it continued to do so for many weeks. Every day for five weeks I emptied out a bag of the tears, once in the morning, and once at night. And its ongoing crying made me tired, and sad.

Here is a letter my friend Kelly wrote to my pancreas after it had been crying for three weeks:

Dear Pancreas, 

Can I call you Panny? Is that okay? 

Panny, you've had a rough go and I'm sorry that that's the case. Janna has worked really hard to take care of you for a long time and she cares a lot about you. I do too. Everybody who loves Janna also loves you. I'm thinking you're probably not on Facebook, so maybe you don't have firsthand experience with how much Janna is loved and by how many people, but take my word for it, it's a lot. And all those people love you too. We're rooting for both of you.  

And we're sorry that you're hurting and that you had to get poked and snipped at. Janna went to great, great lengths to find you the very best, most skilled, and most loving surgeon to do that poking. She did that because she loves you. She is anything but cavalier about you, sweet Panny.  

So I'm asking gently, on Janna's behalf, and on behalf of everyone who loves Janna, to please start healing up. Janna needs you, and you need her too. She's on your team, and you took one for the team, but Janna needs you to forgive her for the poking so you can both get on with more fun things, like visiting the Bean and splashing in puddles and telling stories only the way Janna and you can.  

We're here for you Panny.  

Lovingly,
Kelly

Maybe it goes without saying this letter made me cry. And at a point, it started to seem like the more I started to cry, the more my pancreas stopped crying. Before I went into the hospital, a dear friend who I admire for being easy to show emotion told me that when he had a major surgery, he allowed himself to put all feelings on hold until he got out of the hospital and was in less pain. I found this to be valuable advice, and good permission. I was in survival mode after surgery, and tears could come later. Kelly's letter helped get them flowing again. As did a meal I was eating one day around the same time. I noticed that any time I ate after surgery, my left middle badly ached with a whining, heavy, sour pain. And it only occurred to me that day that this was because eating asked my pancreas to WORK. To produce insulin, and digestive acid, and generally resume its active role in my digestion while it was still bloody and wounded. This brought on a big cry. Not with regret or despair, but with compassion for the little organ I hadn't known before. 

So I started crying over some bland vegetables and low-fat protein. And while my sweet momma tried to comfort me, I kept saying to my pancreas "I'm so sorry... I'm so sorry." As I started feeling her pain, she stopped crying so much and started to heal. And that was good. 

City of Hope

When the pain started lessening after the third week, I was beyond grateful. There had been a long stretch of no improvement and the first sign of improvement was elating. Even a small amount of feeling better was amazing. Because it allowed me to detect a positive trajectory. I still am in a certain amount of post-surgical pain, and on pain medicine after a recent complication (I'll mention in a bit). But I am completely off of the narcotics, and taking far smaller amounts of medicine than I was before.

After I got out of the hosptial, I stayed in a little apartment on City of Hope's campus while the drain was still in. The apartment was really a little cottage in the middle of a grassy meadow surrounded by giant, old trees, sculpture gardens, a rose garden, a library, a theater, and a long row of short trees covered by rainbow colored tags that had people's wishes written on them. It was a place that made me want to get up and go out side. And every day I made it a point to. I walked barefoot because I couldn't bend over to put on my shoes, and the benefit of this was getting to walk barefoot in thick, cool, green grass. This is what I remember most from the second and third week. My feet in the grass. Relearning how to do all of those basic bodily things made life feel new. Not having the mental space for many of my old habits made me feel new, too. 

As the fog of the drugs wore off, I began to blink and look around at where I was. City of Hope is not a place I sought out, or knew anything about at all before I got here. I came because of what Dr. Fong could do. But what I saw when I began coming off the drugs is something that I am still marveling at and learning from every single day. I didn't know that there was a place in the world like this, and forever after I will be recommending it to people who experience a time of significant physical crisis. 

Walking one day in a garden that holds statues of icons from many major religions, I came across a large golden gate that is free-standing without any fence. Just hanging open along one of the paths. The metal gate is made up entirely of carved letters that read "There is no profit in curing the body if, in the process, we destroy the soul." And anyone who has been through an experience that has led them to seek help from a medical system may know how radical this statement is. Asking around, I learned it's a quote pulled from a founding document of the institution called City of Hope's Thirteen Articles of Faith. Strangely, copies of this weren't easily available, but I got one through the help of a librarian who made some requests and found me a copy. From there, I learned about Samuel Golter, the founding executive director, and his book And They Called it City of Hope. That book, too, is out of print. But I was given a copy by the librarian, and it is one of the most beautiful human documents I have ever read. It is the story of the creation of a place intended to provide loving, respectful care and human dignity to people living and dying with Tuburculosis before there was any cure. A place founded on the idea of "Man's Humanity to Man" after World War II, during years when man's inhumanity to man was on full display. It is a story of a place shaped directly by two world wars, massive influx of immigration, unionized labor, an early and prescient valuing of the diversity of culture and religion, activism, humanitarianism, and a world-wide movement based in the Hope that people really could be good at heart, in spite of so much evidence to the contrary. 

Up until the mid-1980s, for over 50 years, City of Hope's services were completely free. Beginning with a radical mission to provide loving care with dignity to individuals in times of "catastrophic illness", without burdening them with any financial hardship, the early leaders of the hospital, and Golter in particular, created an international fundraising effort that invited people to contribute to something with a wholly generous spirit. Against the heartbreak of two world wars, contributing was a way for people to show their own gentleness and humanity, and to demonstrate their hope for more of the same from the world. This patch of ground in Duarte, California began as a row of tents where sick and dying people went to sleep for free and be treated with kindness. And solely upon the wishes of the hundreds of thousands of people who have contributed to it from all over the world for the past 100 years, it has grown into a place where the most current research and techniques and doctors are offered to people in times of great need, still with the same dignity, kindness and respect that were offered before any cures were available. 

Walking on ground like this, in a place that was built by the generosity and volunteerism of so many people, is quite a thing. It feels different, soft, and clear in a way. And it felt like that before I read about it's origins. The people who have known and helped me here are like the people Golter dreamed about. They care. Not in any fancy way like having posters on the wall about Patient-Centered Care, or using conversational forms they've been taught to make a person "feel listened to". They are just people who care. From the security guards to the administration to the nurses to the doctors to the librarians, they are people who don't pretend superiority or practice condescension. Both of which are tiring, and not conducive to health. They just offer great skill and kindness. Which is a relief.

A strange thing I discovered is that almost none of them have read his book. Which is amazing to me. Sad and also beautiful. It's like his spirit, and the spirit of everyone who gave with all of their hearts to those in crises, is still alive and well, and guiding the behavior and actions of the people in this institution. As a gift to everyone who helped me here, I printed and gave them each a copy of the book, telling them I wish that Golter could see them, to know that his dream is still alive. 

Peacock

In keeping with the magic of the campus, two days after I began walking outside in the grass, a royal peacock showed up to keep me company. I was standing with my eyes closed one day, stretching my abdomen on the deep blue powder-coated rehab equipment in one of the parks, willing myself (poorly) towards the shape of a mermaid on the bow of a ship. Because of the fascia around the surgery site pulling me forward, I'd been instructed to do this mermaid stretch a few times a day. Just like my Dr. said, the stretch always really hurt when I did it, but I always felt much, much better afterwards. With my arms back and my belly painfully stretching forward, I opened my eyes, and right in front of me was the ridiculous, giant, beautiful bird. 

In the coming days he sometimes sat with me in the grass. Or I sat with him, making my way towards where ever he happened to be snuggled up and resting in the soft green coolness, and kneeling into a sit so that we could share a little bit of the day. No one around seemed to know where he came from, but ten miles away there is an arboretum filled with wild peacocks, and so people pegged him as a wanderer. After the long journey, he seemed to be content with his environs, and stayed around City of Hope for a couple of weeks. The people in the apartment offices named him Hope, and I was reminded of Emily Dickenson's poem that begins, "Hope is the thing with feathers... ". Neighbors often saw him posed in positions of prominance that looked like he was staging his own presence. On the very corner of a rooftop, atop a boulder on a street corner, framing himself between two coloumns on a wall. It started to seem to me that he was aware of his appearance and I wondered about that. If any animal would be aware of it's own visage, it should be one who had evolved over time to have such an elaborately gorgeous physicality. How could they look like that and not know it?

Beyond that, I began to wonder if he was aware of what his presence meant to the people here who were recovering. It seemed to me like he might. This feeling was encouraged after he hadn't been around for a few days, and I asked the Village office if they knew anything about him. The woman there told me they heard that he'd moved on to hanging out around the surgery center, and in the busy areas around the main hospital. She told me that just the day before, he had walked up to the (unfortunately named) Helford Hospital, and crossed the busy driveway where multiple cars are always dropping people off, vans picking people up, and chairs being wheeled in and out. He walked to the front doors of the hospital, and being automatic, they opened for him. Then he fluffed himself out and walked into the waiting room downstairs, to stand with the people who were awaiting surgery. That was where he went, and perhaps... perhaps?... with some awareness of the impact of his magical presence, where he chose to place himself. 

Can you imagine preparing yourself for one of the most important, frightening experiences of your life, during one of the hardest times of your life, and have a peacock walk in the door and join you in the waiting room? Can you imagine how that would feel? Or trying to tell the story of it later?

People

I have come to believe through this entire journey that love is the one salve, the one action, that can make anything better. This search was necessarily one that I had to make alone, given the circumstances of my life. And perhaps, given any circumstances. Even if I had been married or had children at the time when I set about looking for a doctor, I couldn't have asked anyone else to leave their jobs or schools and travel with me for 5 months. I was willing to accompany myself, and others accompanied me by supporting the search.

Once I was here, preparing for, undergoing, and recovering from surgery, the presence of loving friends and family was everything. I won't name people here, because I have a general practice of leaving the people in my life out of this blog, other than occasional praise. And also, I know that if I tried to say everyone's name who lifted my spirit with company, phone calls, a night or a week spent during recovery, sweet visits with laughter, a run to fill a prescription, a card, flowers, a GIF, an email, a book, a facebook message, prayers, thoughts, good energy, or a contribution towards the expense of this time, I could not do that. If you ever reached out to me, in any way that seemed large or small to you, please know that it was very, very large to me.

For the people who extended themselves in significant ways to help me find a doctor who would preserve my organs, or who kept my spirit up at some point along the way, or who helped me recover from surgery, I hope to have expressed, and I hope to keep expressing my gratitude to you personally and directly. I hope you know that you helped me get well.

Love like this is a big thing to reckon with, and it contradicts a million messages I received from my culture growing up about independence and isolation. In this country, we have a million different ways of relating to loved ones in times of need, that seem to me based as much in economic class as in cultural differences. Growing up in a white, middle class/working class family, my own feelings about this are confused to say the least. I crave company and community, and am ashamed of my need for it. I learned that the craving for community equals weakness, but contributing to community for others equals strength. I know I need other people, and I believe that no one needs me. I like to give and be giving, but I can also feel panicked and worried by being called on. I think I am selfish and greedy when I ask for presence or support, and also believe I am dysfunctional and self-isolating when I don't ask for it. Perhaps because I can only feel like I can do wrong in this regard, and all my actions are equally weighted with shame, I made choices that just seemed best in the moment, since no matter what I did, I would feel wrong. The grace and ease that people met me with is still something I am wrapping my head around, and still striving to learn from.

Setback

A little over two weeks ago, I was scheduled to leave Hope Village, and looking for a place to remain in LA for the last 3 weeks of rehab. I had been getting stronger, exercising well, and was in so little pain that I was almost off of pain medicine entirely. I still had the drain in my body, and because the fluid finally looked clear and I seemed good, they decided to finally take the drain out! But, removing the drain caused an injury that resulted in more pain than I had at any point after the surgery, or in my life. It was like shattering glass on the inside of my right abdomen, below my rib, and up into my right shoulder. I was put back on the full course of the highest doses of the pain medication I'd been on directly after the operation, and it did not even touch the pain. I couldn't breathe, burp, talk, or move without blinding pain, and had episodic contractions that had me on the floor unable to get up several times. I couldn't sit up out of bed without help for a week and a half. I won't write more because it was just over two weeks ago, and I don't like to remember it.

I'll just say it set me back some, and they extended my stay at Hope Village. I am now feeling much better, which I am INCREDIBLY grateful for. After three days of tests they diagnosed the pain as damage to the diaphragmatic nerve, which was torn when the drain was pulled out. They put me on a big medicine that was especially for that, and only safe to take for five days. The words 'nerve damage' were concerning, and I was full of hope that it would not be permanent or long lasting. The pain is not gone yet, but it is so much better, and again, progress is everything. Just knowing that things are on a healing trajectory is the best thing.

I don't know where I'm going next. I wasn't able to make it back to teach for Term 4, so I'm set to return in Term 5, starting on August 20th. This gives me a month and a half where I don't know where I will go or what I will do (with no income I am continuing to sublet my place in Chicago). And this is okay. It's a little scary, but I mostly only feel uncomfortable when someone asks what I am doing next and I tell them I don't know. After I say that, they ask me again. And when I say I really don't know, they ask me one more time. Reading their dismay, I become dismayed myself, and apologetic. But when I am alone, I feel okay about it, and even a little bit excited. The unexpected open time is odd, but maybe it is a gift. I hope that I may get to spend some time rehabbing emotionally and mentally as well as physically.

This whole journey has been filled with uncertainty. And much worse uncertainty than figuring out where to spend a month and a half continuing to recover. I may visit family or friends. I don't really know. I have today and tomorrow to decide, as I am scheduled to leave here on Sunday. And it's okay. What I have learned, through this time, and through my life, is that the very best things are often waiting on the other side of uncertainty, when I've been willing to bear the not-knowing. Sometimes the best life doesn't come through strategic planning, but through trusting enough to proceed without knowing what comes next. I like life like that. I like it better than clinging to the rocks.

Strangers

I want to say something about the people I have met a long this way. The strangers and new friends in Portland, Seattle, Rochester and Los Angeles, and during every distance in between. I don't think, though, that I am ready to do it here. There is so, so much. There are people like prophets and sooth-sayers, guides and angels and old friends. The people I have met have stunned me, and lifted me and changed me. In their wake, I am still changing. This is the place where I feel the strongest wish to share something I've experienced. I want you to have these people like I had them. Or have the gifts they gave me. I don't know quite how to do that yet. In Chicago, I use the show I produce, Here Chicago, to do this; to introduce the amazing people that I meet to one another. Traveling, I'm not sure how. If I were to just start writing about all of these people here, this post would become a book. There will be a way. I'm just not sure exactly what it is yet. 

Thank you for reading. My love and gratitude and good wishes to anyone who made their way here. <3

Nine Hearts

This is D's backyard, where I do laundry.

I have an appointment for surgery in May. I've had it for a couple of weeks. One thing about having a surgeon like this is that his schedule is booked a ways out. (I share about him in the previous post, Tether.) During the time between his already-booked operations, he is teaching in China, New York, and Chicago. So I am waiting. And although waiting makes things even harder financially, I am also grateful to wait. It is letting me catch up on sleep, and take walks outside, and recover some strength and energy after what was a very stressful time, and before the challenge of surgery.

I haven't wanted to write much in the blog since getting to LA. I value this narrative, and plan to continue it. And there are some worthy things within this time too, which I hope to share soon. But as the days are coming, I feel like I would rather be with myself in them, than try to describe things.

I'm still messing around with social media every day. It's a way to feel connected to people I am far from. And I love spending time with close friends, or getting to talk with friends or family on the phone. That is the best. I want to feel loved and to give love right now. I will probably share the surgery date on facebook closer to the time, to ask for love and good energy.

I just had strep for a week. That sucked. Oh and here's something else. While I was walking last week, I saw this playing card on three different days, in three different parts of the neighborhood (the wind, dontcha know). And each time I saw it I wondered if I should, kind of, get something from it. I wondered if playing cards have meanings attributed to them like tarot cards do. On the fourth day, I found it had blown up onto my very own door step, so I took this photo and looked up the 9 of Hearts meaning online, and that was nice.



Lots of love.

Tether

There are familiar feelings of home and comfort in the sound of water draining from a bathtub. After four months of mostly alone travel it is nice to have those feelings. I listen while I'm standing on a grey cloth shag bathmat. My toenails are dark turquoise, hand-painted by a seven year old who is one of my favorite people in the world.

I am in Los Angeles, tired to the bone. I'm staying in a cheap, airy little studio where I'm catching up on sleep. I brought myself here after staying with some of my oldest, dearest friends for a few nights. Their house was the best place in the world to be, filled with so much love and home. But there was construction going on next door, and after 3 more days on the train, the anticipation of early a.m. drilling and pounding had me lying awake in a pool of adrenaline all night. Nearing two weeks without sleep, I rented this cheap little place for a week. It is quiet here, and I am sleeping for the first time in weeks. Every morning I open the curtains to look out over Silverlake's hills and missions and palmtrees. Thick-branched magnolia and avocado trees frame a view of houses and churches scattered over green hills that run up into the foothills of mountains. In recent days it has been misty and raining. Everything out my window looks like my imagination of Mexico.  

I am also walking distance from the friends I'd been staying with, which is important because they feel like my anchor here. Lacking a sense of true north in LA, all my geographical understanding is oriented around their house. Another very dear friend is near them too. And others have been appearing slowly-- some with phone calls and some completely by coincidence on street corners when I am taking the advised daily walk-- and it is really nice to be myself in a place with loving, familiar people. 

I am in Los Angeles because I found my surgeon. An excellent human being who is great at what he does, and treats me with kindness and respect. He has told me three things.

1. It is not true that I "don't need" the healthy organs that other surgeons told me I didn't need. It is true that we should leave them in the body, and that they are necessary in ways that science both understands, and doesn't understand yet. 

2. It is not true, like other surgeons have told me, that those healthy organs have to be removed in order to treat the insulinoma. There is a more difficult, more delicate procedure that attempts to remove it without just chopping out big things. He told me surgeons say organ removal is the only way because they either can't do the more difficult procedure, or they know how, but are not willing to make the extra effort. 

3. He performs the more complex procedure as a matter of course. Not because I have asked him to, but because it is his standard practice to go to such lengths in order to let people keep their bodies. He doesn't see organs as discardable for his convenience. He practices this way as the head of surgery at his hospital.

I also like him. He is joyful. And warm. And human. And his "main passion besides surgery" is going to see theater. When we first spoke on the phone, he said excitedly that he would have loved to have met me in Chicago (thinking I was there) when he was there last week, seeing a show at Theater Wit! He smiles at me with the same kindness that you and I smile at each other with. He said he wished he had known I was trying to contact him when I first started trying 3 weeks ago (before the hospital gatekeepers would consent to let me ask him a question from out of town). He said he was glad I kept searching, and congratulated me for not giving up. 

So after 4 months of looking, traveling, waiting, persisting, listening, asking, hoping, giving up, shutting down, trying again, and being treated with irritation and condescension by surgeons for saying these words, "I am looking for a way to remove the insulinoma without removing my organs, if I can. Do you know of a way to do that?" I found my person. The searching part is over.

Fully involved in that process, I hadn't really had the head room to consider that the next part of this would be harder. The surgery was described to me the other day, and it is a major one. Even with this skillful person performing it, surgery on this delicate, "fussy", centrally located organ holds significant risks, including organ loss, damage to vital arteries and ducts and life long consequences. It also holds a higher than usual risk of death. If all goes well, the recovery process will be 4-6 weeks. 

After explaining everything to me, he encouraged me to go away and think about it, because it is my decision. I appreciated this so much. His recognition that all of this is my choice, and that I am not under anyone else's authority.  After all this traveling and searching, I am surprised by how unprepared I feel to reckon with this. But I guess my time has been filled with the effort of the search. This is the first time I've been free of the effort and the stress of that, and am just facing the procedure. It was good to have his blessing to take the decision seriously, and not be pressured or rushed. I am sitting with it this weekend. I just wanted to share with you guys who supported me that the searching part is finally over. Hallelujah. 

*

Sometimes my phone sends me texts. From myself, to myself. I have my own number saved in my phone as "me", because I text myself occasionally with things like phone numbers or addresses, blazing insights, or the name of my landlord to remind me to send in my rent check. I use it as a note pad and calendar. But sometimes my phone does this by itself. It writes and sends a text message to me from me. Usually the messages are digital gibberish. Like this one from July 7 of 2015: 

"D#(cent sign)@(cent sign)3D R'sqqq11q a a q2 was q was q Wasa's waters aaw a qqq Wawa's qq1 was was q was a was qaaq Wawa's aaaaaaa"

You can tell that's my butt writing me a message from my pocket. But it's still impressive to me somehow, that the mistake takes the form of a message composed and sent and received. I also think it's cute. 

But then sometimes my phone sends me messages that seem very coherent. I've only ever gotten three like this, and I kind of cherish them. They are probably the same kind of thing; my phone activating itself in my pocket or on a table, and then maybe turning on the voice to text feature and recording some bit of surrounding conversation?... and then sending it to me. My phone sent this text to me on Dec 3 2015:

"She does so many interpretively dances already"

This one is from Sept 5 2015:

"And all of Janna's friends are like artists so they're kind and lovely  and you're like who is this who has found their way here"

I got one last night, April 8th, while I was staring out the window trying to have a mental conversation with God, or with my self, or with whatever it is that knows what to do. Going in to a physical trauma like this, I am looking for some feeling of resolve or positivity or life-will. I'd like to have a feeling of hope or a wish to be here to bring me into and through the pain and injury and recovery. I'm asking and listening for any part of me that feels like going through surgery is worth it. I want to find a will or a wish to live through and past this. I haven't been able to find that yet. This message came while my phone was on the other side of the room from me. It said

"Saint I miss you and I finally tether" 

I don't know what that means. But it was nice to be sent a message at that moment, and to have something to muse about. 

I think that's it. I don't have anything else to share right now. 

Okay Rainbow

I have a date with my mom to watch The Office ten minutes from now. She joined me in Rochester, where there has been such a strange and disappointing series of events that it is difficult to relate, though I will try and do so here. Even with just ten minutes to write, I’m starting now so that I’ll feel obliged to continue after she goes to bed. Motivation is a scarce commodity these days, and so I’m acting on the little morsel of it that I feel tonight for whatever reason… maybe the warmer weather, maybe the relief of a weekend where once again, there is Officially Nothing I Can Do Until Monday. Now there are six minutes left before our Office date. So I’ll lay down something here that'll make me want to return after being captivated by Jim and Pam’s unrequited-all-over-again love for the next hour and a half.

How about this: this is the only time in my life when I have not been able to see (or feel, or think) my way out of a situation.

*

The feeling of not being able to see a way out is big. The insulinoma I have is small. There is no spread or malignancy. But it needs to be removed because it makes a never-ending amount of insulin that constantly takes sugar out of my blood stream and packs it away as fat, which starves the brain, muscles and central nervous system, resulting in Julia Roberts Steel Magnolias-like, orange-juice-requiring emergencies. It should also be removed because some doctors say insulinomas can suddenly become malignant after an uncertain number of years. There are conflicting opinions about that. Some doctors say insulinomas “never” become malignant. One doctor told me with a wide, excited smile on his face, “Guess what? You have what Steve Jobs died of!”

There is contradicting information about insulinomas because there isn’t a lot known. Only 2 in 1,000,000 people have them, which also makes it so that most surgeons and endocrinologists have zero experience treating them. This is part of why this search has taken some time: I am looking for an alternative to a standard surgery that is already very rarely practiced.

I’ve been looking for an alternative because the standard surgery—when performed by most people—involves the loss of healthy organs. Not because the organs are sick or broken, but because it is technically far simpler to remove half of the pancreas and all of the spleen, than it is to isolate and remove just the insulinoma. The medical alternatives to that procedure are so new and uncommon that most surgeons say they don't exist. I have traveled to see a specialist in Seattle, and one at the Mayo Clinic in Rochester, to learn about them. Surrounding that travel has been days and weeks of waiting for records to be shipped from one hospital to another, for them to be received, for appointments to be made, for further tests to be done by each new place, and for results.

During this time I have also learned that there are differences among surgeons who practice the standard surgery. There are actually three different ways of executing that procedure, based on both a surgeon’s level of skill, and their willingness to make a great deal of extra effort to save your organs. I've learned that there IS a complex approach that can save the organs, but that most surgeons aren’t skilled enough to perform it. And even those who are, are not inclined to go to the trouble, because the medical consensus is that those organs are expendable.

I respect the opinion of surgeons who say that I “won’t even miss” half my pancreas and all of my spleen. And I believe that opinion is based in science as much as it is based in their wish to avoid the more challenging procedure. If I don’t need those organs, why should they go to that great trouble? It is a reasonable question. The answer for me is that there has been a strong, wordless, cautionary feeling in me about living without those organs since the beginning. And I pay attention to feelings like that. It is a feeling that was recently validated by a hematologist at Mayo, during a conversation that went a long way to validate my caution.

Finally having that feeling validated, or scientifically justified, was an interesting part of this experience. There have been a lot of interesting parts. This time of traveling and trying has been bizarre, lonely, exciting, disappointing, overwhelming, emotionally exhausting. I am getting near to the end of the exploration now, and hope to have a plan soon. Along the way there has been a lot of hope and crushed hope. And a lot of contradicting information. And uncertainty about deeper things that, to me, are even more important than the medical treatment. It has been a strange, strange trip.

I haven’t written in a while because there’s been too much going on. But here is my best attempt at sharing some of the bigger moments, just some bits and pieces—perhaps not even necessarily in order—from the way.

Electric Surgeon

I went to Seattle to learn about the first alternative to the standard-of-care surgery. It was offered by a surgeon who accidentally said that he worked for the company that made the technology used in the procedure, before quickly backpedaling to say that he didn’t really work for them, but rather, represented them in conferences all over the U.S.. When he said that, maybe especially because of his quick backpedal, I felt like maybe I should judge him for it, but I didn’t really. I was open and very hopeful to learn about the first option. It turned out that the treatment he had available, while it didn’t risk organ removal, was even more invasive and traumatic to the body than the standard surgery. It involves being sliced open wide enough to have my heart moved and my pancreas turned around so that two small needles can be placed on either side of the lesion, and then electrocuted at such a high voltage that it causes the whole body to spasm like those chest paddles do. They give multiple shocks, in time with the heartbeat over a few minutes, then put the organs back in and sew up the chest and abdomen. The process holds no guarantee that the insulinoma won’t return, so that it may have to be repeated more than once in the future. Perhaps for obvious reasons, I didn't want to dive right in, and I was still waiting to hear back from Mayo about the ablation option. But I was happy to know there was at least an option. That I had a choice.  

Words

There was a point where I decided to take the time and look for these alternatives. It was a scary decision to make, to leave the sweet home of friends near Portland, and a gentle and wonderful surgeon, because I wanted to learn what else was out there. It felt really strange to look beyond my friend’s colleague, as I trust her advice above anyone’s, and because I also really just like him. I was aware at the time that I might well be starting off a journey, already at the end of the rainbow. Still, I wasn’t comfortable with his frequently referring to the organ-removing procedure as our main plan. I really wanted someone to understand my priority of trying everything else in surgery first, and only taking the organs as a last resort—even if the other things were more difficult. But I didn't really know the words for that. I just kept sort of haplessly reasserting, "I want to keep my organs". His response to that was to offer reassurance that I didn't need them, which just made me more uneasy. I didn’t want my surgeon to assure me that I didn’t need them. I wanted him to say “I prioritize you keeping them, too.”

It’s taken me all of 2 months and 4,000 miles to learn to say “I am looking for someone who feels confident in his ability to enucleate the insulinoma, given it’s location near the main pancreatic duct, and in the case that that isn’t possible, is experienced with and also inclined to go the extra mile to perform a spleen-preserving distal rather than a spleen-removing distal.” It empowers me to have those words to say what I mean. And if I’d known enough to say that to my first surgeon, it probably would have gone well.

But I’ve also noticed that when I’ve said it to others more recently, there seems to be something mildly insulting about it; a flash of indignation crosses their eyes, like I'm speaking a language I haven't earned the right to speak, and about something that is none of my business. There is a necessity for anyone to understand our options and say what we want, but there also seems to be a an unspoken etiquette that requires a patient not to seem like they know too much. This probably been the hardest thing for me to navigate. In general I want people to know that they are liked and respected by me. And also, I have zero wish to offend a person who will be slicing me open with knives.

One of the strange things about traveling and talking with different people has been the wildly conflicting information I’ve gotten. And one of the fanciest pairs of contradictions I received were within a two day period, where one doctor told me that many insulinomas go undetected for up to 30 years and almost never metastasize, and that I absolutely do have time to investigate the best treatment and absolutely should, and then another doctor tell me that what’s inside of me is a “dark horse, and can kill you at any moment.”

Message Delivery

Taking me to an appointment in Portland one day, the man driving my cab asked what my trouble was. I gave him the short version and then he paused for a moment and said “You’re going to heal this. I don’t know exactly what’s going on or why I’m saying this, but I feel like it’s a message I’m delivering. Just, like, you’re just supposed to know that. I don’t think it’s gonna be a surgery or anything like that. It’s just gonna be gone. Mark my words. On your next Xray, it’s not gonna be there anymore.”

I didn't really know how to reply to that, but thanked him gratefully. I had seen him a couple of other times in town, because there was only one cab company, and just a small handful of drivers. But it was the first time I'd told him anything about myself. It was a startling and odd thing to hear. Something I wish could be true, but that I was afraid wasn't likely.

Sunlight

When I was in Seattle visiting the electrocution surgeon, I stayed in a super-cheap micro-residence place that I never ever wanted to leave. It was on the side of a mountain overlooking the sound and awash in curtains of rain and sunlight. The man who built it happened to be an emergency room surgeon who sought me out when he heard from the housekeeper why I was there, and sat with me for an hour in the sunlight asking me questions, answering my questions, and giving me a kind of insight that no one else had. It was a total gift. The most illuminating, comforting conversation I had along the way, and I was seriously tempted to be electrocuted, just so that I could stay in his place and recover there.

Winter

I arrived in Minnesota in the middle of February in the middle of a blizzard. Hopefully that paints a picture.

Fruit and Nuts

On the train from Seattle to Rochester, I met a woman from Williston named Carol. Her powers of conflict resolution were astounding to me, as I watched her create warm, humane, laughing common ground among a group of people so different in their religious and political beliefs that they seemed otherwise bound for a fist fight. Later that night we were randomly seated next to each other by the steward in the dining car, and I was delighted to have a chance to learn more from her. We had a great, laughing conversation with our two other table mates (strangers also), and then kept talking long after they turned in. We were talking about people and differences and peace, and I remember she was sort of “reading” me as we talked, looking at me for what my story was. I’d made a choice not to share my medical stuff with her at all. At a certain point it can be really tiring to talk about.

Toward the end of our conversation she said, “Do you mind if I pray for you? I know that probably sounds weird. But I don’t have any agenda. I just sometimes know when something is needed. Like I feel it, and this feels like a physical concern. If I have your consent, I’d like to be available in the way that I can.” I was surprised, but not as surprised by this kind of thing as used to be. It was just a wish to give what she had. She then asked me if she could put her hands on me while she prayed and I said yes. Because, why not. I wasn’t raised with any religion. But I’m also not a person to refuse an admirable stranger’s surprising and generous wish to heal me. She put her hands on my arms and closed her eyes and prayed, and her hands grew very hot. I closed my eyes too and she spoke her prayer out loud, and I don’t remember her words. I remember feeling very loved.

After we said good night and I thanked her, it was about 10pm and I went to the snack car. I like walking on trains at night. Like the loud, cold rattle of the tracks in the open-air space between cars, and the low green fluorescent lights in the viewing car and the dark black scattered with tiny lights beyond the big, domed glass panes. I like the whispered conversations between people still awake, and I even like the smell of a train car full of 80 strangers cuddled up with fleece blankies and kids and stiff necks, sleeping in the same room. 

I was also walking because I needed sugar. Part of this condition is managing my blood sugar by having fruit and nuts nearby all the time. Earlier I’d seen the snack car selling some trailmix with both, and some separate packages of peanuts and dried pineapple. Even if I could find an apple, I’d be good. But I needed something. My tongue and fingertips were starting to go numb like they do when the sugar gets really low. I always eat something at that point, but the few times I haven't, things go in the direction of slurred speech, blurry vision, shaking... I guess it goes without saying that beyond that would be worse. I always have some dried apricots or skittles handy for a pinch, so this doesn't happen anymore. But I’d forgotten to stock up because of the earlier needs of the day, packing and traveling and being out of familiar place and routine.

I walked downstairs to the club car, thinking “Just fruit and nuts. Fruit and nuts is all I need” to find the car had closed for the night. With a little electric wave of fear, I walked back up into the dining car to see if they had a bottle of apple juice or soda or something that I could take to bed with me, and all the car attendants had turned in for the night. Thinking about being on a train without station breaks all night, and with no way to buy sugar, I felt afraid in this physical condition for the first time. 

When I got back up to my sleeping compartment, there on my bed was a big, beautiful round orange and a bag of sugared cashew nuts, with a note from Carol. “It was such a pleasure to meet you,” it said. Again, I had never mentioned my health situation, let alone my blood sugar issue. And writing this right now, I realize I have no idea how she would have known which room I was in.

Like Food

I learned that the pancreas is the most difficult organ to operate on other than the brain, and that it is the consistency of warm butter. Not like meat, like one would imagine. It is also very fussy and does not like to be touched, let alone operated on. It can seize up and become inflamed or infected very easily, causing pancreatitis, and can produce chronic leaks of both blood and bile when interfered with. 

I learned that my insulinoma is along the line of the main pancreatic duct. If that duct is cut or nicked during enucleation (the attempt to extract the insulinoma) bile can leak out into the body, and it will eat your other organs—heart, lungs, liver— “like they are food.” This is part of why I went looking for a non-surgical alternative.

Disappointment

I met with two surgeons at Mayo. One is who I came here to see. He offers a very new, cutting edge procedure called alcohol ablation, which has only been performed on 17 people with insulinomas over the last 15 years. Ablation holds no risk of pancreatitis, leak, bleed or organ loss, which are high risks with the standard surgery. This procedure also has, inspite of it's small numbers, a nearly 100% rate of success. The second surgeon I met with provides the standard surgery. At Mayo you have a central, referring doctor, and he wanted me to see this second surgeon as well, so I did. 

The doctor who practises ablation was a kind, even-handed, no-pressure gentleman who gave me honest and thorough information about the pros and cons of his procedure. When I left his office I felt light for the first time in this journey. I texted my family to say how happy I was to be there. The next day however, the surgeon who practices the standard surgery warned me fiercely against the ablation, telling me all kinds of terrible and dangerous things about it and sternly instructed me not to do it. Maybe needless to say, the words of these men in these towers hold weight and authority, and it was hard to know what to do when my heart told me one thing and an expert of very high status, at an institution that is a virtual global Mecca of medicine, was very adamantly telling me another. I felt frozen for a short time, and very alone, unable to sort through the pressure. It was snowing in Minnesota in the middle of February, and I felt afraid and overwhelmed. The one thing I took comfort in was knowing I could take my time. I could wait to feel some clarity, and then act.

I talked with some good friends by phone who helped me think, and asked me good questions and empathized with the difficult choice and gave me support. After two weeks, I finally started to feel clear that the ablation made sense for me. But when I reached out to him, the ablation doctor told me he was no longer willing to work with me, because I had taken two weeks to think about it. Amazingly, he said that because the treatment is so new, he does not want to work with anyone who has any hesitation at all. He doesn’t want anyone having any regrets, because ‘people like that’ are more likely to sue him. I tried to explain that the time I took was for the exact same reason; so that I felt clear and committed to whatever path I chose. But he didn’t care. For a few days I was lost. I had come all that way to find something I wanted, and then, because I took time to sort through conflicting information, it was gone. It was hard not to feel like the doctor decided that I wasn’t worth helping. I also wished he had told me that I wasn’t allowed to take time and think about it before I paid for two weeks in a residence hotel to stay here and think about it.

Bad Ideas

After the ablation doctor said no, I thought long and hard about the Mayo surgeon who offers the standard of care surgery. But I didn't feel good about what he was offering in order to preserve the organs. By that point I knew about the existence of something called a "spleen-preserving distal", which is an advanced procedure that goes to much more trouble to save the organs. But in all our conversations, he didn’t offer it. Instead, he suggested that —in the case that enucleation isn’t possible—he could cut my intestines in half and sew the bottom part of them to my pancreas, and the top part to the side of the bottom, and just leave things like that forever, open and stitched to my pancreas for the rest of my life so that any bile leaking from the pancreas would just go directly into the intestines… forever.

There have been things along the way that I have been confused or conflicted about. But this was not one of them. I immediately felt uncomfortable with this. Partly because I know that a pancreas does not want to have the weight of an intestine stitched to and pulling on for the rest of it's life. This is due to its fussy and fragile nature described above, and to the fact that the contents of your intestines are not supposed to be open to your other internal organs, because you can die from sepsis. One day the nurse practitioner who coordinated things for me looked at his medical plan, and on reading it exclaimed out loud to herself, “What?! Why?”. When I asked what she was reading, she told me she was looking at his plan to cut my intestines in half and stitch them to my pancreas, and she told me I should never consent to have that done. I told her I had felt the same.

I started my search all over again, looking for surgeons who can, and are willing to, perform spleen-preserving distals.

Jessica and Holy Descendants and Crows

Jessica came to visit me for a day in late February. She got on a plane and flew an hour and stayed with me one night, and then got zero sleep the next night in order to fly back early to Chicago and teach the next morning. Like a super hero. She brought me colored pencils and juice in the morning, and her jubilant, playful kindness. While she was here, we watched Zoolander II and The Divinci Code, neither of which either of us had seen before, and both of which actually, bizarrely, have the exact same plot. We took long walks, and we saw a flock of one million black crows flying together over the land. Seriously one million. They covered the whole sky and kept coming for 15 minutes. Crows, which are normally independent creatures that hang with a friend or two or a small crews, but which don’t do the starling murmuration thing. It was eerie and delightful and terrifying.

Helicopter

There is a blue helicopter that lives here in Rochester on the roof of the Saint Mary’s building, called Mayo One. It flies away many times a day, to all different places in Minnesota and outside Minnesota, to go and fetch people who need help, and bring them here. Sometimes when you see it flying low and from the side, you can see a whole team of women and men working inside to help someone live. And probably to soothe them. It reminds me of stories of unlikely animals saving humans… and unlikely humans saving animals. People do so many things to hurt each other. For some reason, this little blue helicopter is one of the best things I have seen us do. Every time I see it, I cry.

Finding Out Why

Like I mentioned before, this quest was guided by a choice to trust an instinctive feeling that wasn’t backed up by the experts around me. Which has been nothing but lonely and frustrating. It is HARD to remember oneself as any kind of authority on one’s own body in a medical context. Surgeons are literally professional experts on your body, and they don’t have any use for your intuitive hunches. If they say you’re fine without a spleen, your own wish to keep it is disrespectful in a way. My wish to save my spleen and pancreas have been met with mostly polite impatience and lengthy explanations about why I am wrong. I’ve been told by every surgeon along the way that a spleen is expendable, that I “won’t miss it”, that it really serves no purpose outside of fighting some bacteria I can get vaccines for, and that not having one “won’t change my life at all”. I have also been told that there is no research that shows that living with half a pancreas instead of a whole one would cause any trouble.

I have no reason to disbelieve those people. But I do. I very deeply, wordlessly, instinctively do.  And I didn’t really have a “choice” about trusting that feeling. I had to. Like that feeling you get once in a lifetime that says, “don’t get in your car right now,” and you don’t, because something won’t let you. We usually never get to find out what those feelings were cautioning us about. Sometimes we do. Sometimes we pass a multiple car pile-up farther up the road that happened just minutes before we got there, and go “Wow… maybe that was why”. But usually we never get to find out why we hesitated.

I’ve been okay with not knowing why I have felt strongly about looking for a way to keep my organs. I’ve found a way to talk about it with doctors saying, “I understand that science says that I can live my life well without half my pancreas and all of my spleen. And I may yet choose to have a procedure done that might cause me to lose them. But it is important to me to trust this protective feeling that I have about it, and ask if you will too.”

One day something happened that may have been finding out why. As part of sorting out the conflicting advice of the two different surgeons here at Mayo, I decided to schedule myself an appointment with a hematologist. I thought it might be helpful to talk with someone who actually knows what life is like without a spleen; who sees and treat people in that position on a regular basis. The hematologists (things can be very team-based here, and THREE hematologists came to meet me at once, like a happy little choir) were incredibly welcoming, and actually congratulated me on asking to meet with them before having a procedure that would lose the organs. They were kind of over the moon about it. They told me some things about living without a spleen that were in contradiction to what every surgeon had told me before. (I hesitate to write them here, just in case anybody reading this doesn’t have a spleen. I really believe that expectations are powerful. And if I do have to have my own spleen removed, I will fully expect that things will go well, and I have no wish to encourage negative expectations in anyone who has lost theirs.) I will mainly say that everything they said confirmed my instinct about it. And one piece of information they gave was of particular importance.

They asked me if anyone in my family has a specific condition, which recent science has shown to be hereditary in people who have lost their spleens. Meaning that, if the condition is present in the family, a person who loses their spleen is very likely to develop it. Whereas a person who has a spleen seems to be protected from inheriting it. When they asked, I told them that my Dad has that condition. And they told me that is something to weigh very seriously when considering a spleen-removing operation. I told them that I had been weighing it very seriously. I just hadn’t known why until now.

Being the Rainbow

One day, when I gave myself a chance to wander around in Rochester without worry (probably on a weekend like this one, where everything is closed and there was Officially Nothing I Could Do Until Monday), I walked into a Chinese Shiatsu and bodywork place. They were an informal little place where they didn’t set appointments so much as they just ask you to wait until a practitioner is available. Their rates were cheap and I decided to wait. I am always in a better mood when medical offices are closed, and for some reason, was just letting my heart be light for a minute. Other people in the waiting room were open, and as different ones came in and out, we were talking. I heard a bunch of people’s stories, and really enjoyed the time. Then a man came in who was a little topsy-turvey, and shared that he was at Mayo to get help with a vestibular problem. He had an inner-ear disease that was making it hard for him to walk, work, think, read, everything. He was constantly dizzy, having vertigo, and a pounding, ringing pressure in his ear. He told me his family didn’t even believe him about it, his friends didn’t understand it, and that he’d just seen a doctor who’d told him that while the condition was real and very detectable on all of their tests, there was nothing to be done about it, and he’d just have to live with it for the rest of his life. He looked beyond heart-broken.

I told him that I was diagnosed with the same thing as a teenager, and that I still have trouble with it sometimes. But that I’ve had stretches of years without any trouble at all. And that it is way better now than it was in highschool, or even 10 years ago. I empathized with his experience of the people closest to him not understanding, and sometimes not even believing what’s going on. And especially with the anguish of hearing “it would never go away.” And I told him that that isn’t true. I told him that what doctors should be saying instead of “there is no help for you” is “we can’t help you,” and that it can and does get better. I gave him resources I have used, from online vertigo resource groups, to a great specialist in Chicago, to exercises and medications that did the most good for me in my late teens and twenties. I told him what he was dealing with was the hardest thing I’ve ever dealt with physically, and that even if others can’t see it, it’s not in his imagination. I told him it is real, and that it can heal, like any other part of a body can heal, even when there isn’t medical help. I told him that was something I felt like he could do if anyone could.

He hugged me and his eyes were like sparkly lights. “I don’t understand what’s happening here,” he said. “I just wandered in to this spa randomly, on the worst day of my entire life. Just having taken all these God-awful, dizziness-inducing tests, and then being told by the doctors at Mayo that I have a disease there is no cure for. Because if they can’t help you, no one can help you, right? And then I met you. And you’re like…  a rainbow! You’re like everything I need in this moment, and if I hadn’t met you I don’t know… how things would have gone with me. I mean, not to be grim. I know you know you’re being nice. But you’re never gonna know what this did.”

I told him I sort of knew. Because other people have done it for me. It’s a thing where you pay attention to the moment like it has some real potential, and you notice what you can be for someone, or what you have to give, and you give it.

Orange

After staying in a sort of shoddy but clean and cute in a retro-way residence hotel here in Rochester for the two weeks I took to think, I noticed myself waking up sneezing in the night, and with pains in my face, both of which are weird for me. I was taking Advil and allergy medicine both to sleep at night, which is also weird, and for some reason one morning it occurred to me to open the bedroom closet, which I’d never used before. Inside was a hole in the wall about two feet across behind the pipes to the bathtub. The drywall around it was warped and puffed out like cauliflower, and brown, red and black mold was growing in branches all over the wall. There was a plastic sheet taped with a single piece of tape over the top of the hole, and otherwise hanging open around all it’s edges. I moved out that afternoon.

A good thing about that place had been it’s cost. $60 a night is way more than I can afford, but it was also way less than any other place in Rochester. The place was also willing to have me without knowing a firm departure date, which had been helpful. Leaving placed me in an odd position. I had just heard the day before that the ablation surgeon might no longer willing to work with me, and though that wasn’t confirmed yet, I was feeling worried about it. It was snowing that day when I moved out, and I went and sat in a nearby café with my rolly bag and tried to think about what to do. This was probably the lowest point of this whole time. I felt alone and exhausted, with no idea of what to do next, and not having a home base felt un-mooring. Listings on Trivago and Airbnb were all beyond my means, and the few friends who knew people in Rochester at that point had not gotten back to me. The people in the restaurant were nice enough to let me stay for a few hours while I was looking online and making phone calls.

When I walked outside to get some air, I noticed that the door right next to the restaurant was for a place called The Rainbow Motel. I went inside and it was lovely. Kitchy, cozy, lovingly decorated. Shabby enough to be cheap, but well-cared for enough to feel safe. Amazingly, their rates were also $60, and I made a reservation for the next two days and moved my things upstairs. That night, I woke up with bed bug bites. I had bedbugs in an old apartment about 5 years ago, which is how I know about them. I am not allergic to anything I know of besides them. When I’m bitten even once, the area around the bite swells up to the size of half an orange, and it is the most painful, grossest thing. I got four bites that first night (which I somewhere heard was usually the amount of bites given by just one bug. An infestation causes many more than that). I turned on the light, lifted my pillow, and saw one little guy traveling swiftly across the white sheet, puffed out with my blood, and smushed him with all the anger in my tired heart and went back to sleep.

The next day, aware of the rareness of my affordable accommodations and hoping that I had killed the only bug, I slept there again. I got three more bites the next night, and so, itchy and swollen and deformed, told the hotel owner, checked out, and made my way back to the café. That day was worse than the one before. But my living situation is fine now. I’ll save that story for another time because it is remarkable and multifaceted. The short version is that I put everything I owned in a dryer on high for an hour (that kills any vagabond bugs), soaked my suitcase with a spray bottle full of 90% rubbing alcohol (that does too), and moved in to a new place that is quiet, safe, clean, beautiful, and cheap, thanks to the magic of a woman named Bao. When I arrived in my new place, after a long, weird day of not eating much, I was having another low-blood sugar episode. I opened the refrigerator to find a big, beautiful round orange on the top shelf, and ate it.

Foster the People

While I was waiting to hear the ablation Doctor’s final answer, I went to a Bernie Sanders rally. And then I phone banked for him all day the next day… the day before Minnesota went in to caucus. And then he won Minnesota. And that felt great.

Roller Coaster

After the disappointments here at Mayo (which still feels like an oxymoron), I sent my medical records to a surgeon at a big hospital in LA who advertises surgical procedures for insulinoma in particular, which he expressly states are intended to “preserve healthy organ tissue.” He writes on the hospital’s website about the inclination of surgeons to remove organs in this specific surgery because it’s simpler, and how that is by far an easier procedure than the delicate work of saving them, and that his whole practise is geared toward saving as much of the healthy organs as possible. A good friend randomly sent me a link to his page, and perhaps needless to say, I was beyond excited to find him. Reading this felt like it might be my pot of gold.

I overnight mailed my records, and it took him 14 days to get back to me, and each day his medical assistant told me, “It will definitely be tomorrow.” Toward the end of that time of waiting, I had the idea to ask my dear friend who is the liver and pancreas surgeon if she had any knowledge about this doctor. She replied saying that he is actually widely known as something of a “shark”; that he advertises exactly what patients want to hear, but is actually not good at what he advertises, and in generally is not a very skillful surgeon at all. This was profoundly confusing to me, given that what he is advertising is the most advanced form of an already advanced procedure, and it doesn’t seem like someone could offer that without being good at it. But my friend says he is actually relatively known for this contradiction among liver and pancreas surgeons, and that colleagues of hers who have worked with him said that they would never recommend their family members to him, or have him operate on themselves.

This was so much sadness. Maybe even worse than when the ablation doctor saying Sorry Nevermind. But past the disappointment, I am very grateful to have that inside information. I am lucky to have my friend. In place of this Doc, she recommended two people who she thinks are not only qualified, but would also be very much inclined to do a spleen-preserving distal in the case that enucleation is not possible. One of them is here at Mayo (though no one here had told me about him) and one is in LA. I've overnight-mailed my records to both, and I am presently waiting to hear back. 

Momma

My mom joined me here in Rochester a few days ago. It was brave of her to get on a plane from Arizona, switch flights in Colorado, and come all this distance, because traveling is not her favorite thing. And she’s already done her share of mothering. She’s more than earned a leisurely retirement just from her years of bringing up me and my brother. I am a little bit embarrassed to have called on her. But I reached a point during the Weekend of The Mold, Bed Bugs, and Sorry Nevermind, where I wasn’t great by myself anymore. I am grateful she is here. 

Which brings me back to where I started, and the fact that I have no idea what to do. I am waiting to hear back from new doctors, but I don’t feel any more sense of clarity or hope or home in any of this than I have since it started. Having run out of options for alternative procedures, I’m back with the major surgery being the way to go. And even though I am very glad to understand that there are differences in how it may be performed, I just don't want to do it.

That doesn’t mean I'm not going to. It is just daunting to face a major surgery with a 4-6 week recovery process, during a time when I don’t feel a very strong life-will. I don't say that to be scary. I have zero wish to do myself any harm. It is more the opposite. I’m concerned about my ability to undergo & recover from a major physical trauma when I don't feel like fighting for my life.

I know that is an awful thing to say. Probably the awfulest. But we all feel awful sometimes. We feel heartbroken, raging, depressed, vengeful, scared and ashamed sometimes. And then we heal and go on. Right now, I feel hopeless about my future, and untethered to the world. In more normal circumstances, I would be patient with that feeling, and take care of myself through it, and trust that it would heal with time and positive action. The last thing I would do is put myself through the trauma of a major surgery in the middle of feeling this way.

I do realize that the surgery may help, or I wouldn't be pursuing it. I also know, deeper than I know anything, that you have to fiercely want to be here in order to mobilize a body’s healing and recovery forces. I don’t feel that way right now. Right now tiny cuts aren't even healing. Not once on this journey have I felt like “Yep, let’s do this thing and get back to living! I’m determined to come through it great!” and that concerns me. This is another reason I've been looking for a less traumatic procedure.

One More Message

After I sent my records to the electric surgeon in Seattle and to the ablation doctor here at Mayo, and before I had heard back from either of them, I waited in Hood River long enough that I decided to go ahead with the procedure in Portland. I made an appointment for the CT scan that the surgeon there requested. On my way in to the scan, I got a call from the Seattle doctor saying I was a candidate for his procedure, which made me so happy, and set things in motion. In Seattle, the day after I met with him, I got the call from Mayo and then left for Minnesota a few days later. But before any of that happened, on my way from Hood River to Portland, where I’d have the CT the next day, I was accompanied by the same magical cab driver.

It was a cool thing to see him again. On the way out of town, we talked about weather and mountains and plans and prospects, and then he started talking to me again in the way he had a couple weeks earlier, with this gentle, relaxed sort of warmth. It is a hard tone to describe, but I have heard it a few other times in people who just decide to open up and say how things are in a way that is un-pressed and generous. I heard it later in Carol, and in Bao, and have heard it in other sparkling strangers in the past. Maybe it’s what Being the Rainbow looks like from the other side.

Whatever it is, I always wish I had a witness or a recording device to verify it. This time I recorded him. He had started saying things that I couldn’t believe he was saying... and I pulled out my phone and started recording. I thought about asking first, but then I thought the self-consciousness of being recorded might change him. So I just recorded, and then when we got to Portland, I showed him the recording and asked if he would like me to save it or delete it, and offered to do either one in front of him. He said I could keep it, and that I could share it with anyone as long as I didn’t make any money off of it. Here is a portion of the recording:

Him: “Just say ‘I am receiving’, okay? And ask for our- ask for help okay? You don’t need anything to ask for angels. You can say ‘Hey, I need some help right now. I could use some angels, how ‘bout a hundred of ‘em?’ Cause there’s no shortage of us. Okay? And, you might not know it but, it’s all inclusive. You’re part of the love… Be prepared for this because you’re probably never gonna see me again. But it’s a good thing. People come into people’s lives for a reason. And not all of us are just regular people, you know. I probably ended up in Hood River for this—because I had never heard of Hood River until six months ago. I came here to be with my kids and as soon as I got here they moved! (Laughs) If all of us were perfect, we wouldn’t need God. But we’re all made in the image of God. I’m not gonna get all religious on you. I’m not gonna get all Jesus-freak on you. But, but open your eyes. * Keep your heart open. And then see yourself happy and healthy, if it’s your priority, then you’re healed.

Me: (*at the point of the asterisk above, music started playing, and I thought- maybe it’s his phone’s ring tone, because his hands are on the wheel and he hasn’t turned anything on. But the music wasn't coming from one location. It was just kind of around, like it was coming out of the car’s speakers, but the radio console was dark. The music kept playing for the next 3 or 4 minutes. I said:) What is that music?

Him: It’s me. You got a long, beautiful life ahead of you, and you’re going through what you’re going through now so that you can be that woman who qualifies for the gift that you’re about to get. And it’s going to change your life. You’re never gonna forget this stuff. You’ll never forget. Come on—how often to cab drivers make sense?! (Laughs.)

Me: They seem to make a deeper sense than a lot of people I meet.

Him: Yeah, but that’s because you’re not runnin’ in to regular cab drivers all the time, are ya? (Laughs) It’s a wonderful life out there. It’s a big world and it’s full of wonder and glory, and it’s all yours for the taking. All you have to do is accept it and receive. If I get you there safely. Ha!

Me: You will.

Him: Of course I will. Of course I will. (Silence)

Me: So you’re saying I don’t have to figure it out.

Him: it’s already been figured out. Your whole life has already been figured out. It’s not for you to figure out. If we were supposed to figure stuff out… then our purpose that we were born with would be known… you know I don’t… you know we came here to—okay. Do you know that you’ve already been to heaven? You’ve already been there. You are here by choice, okay? You came here by choice…. We have the power within us. It’s already given to us. All we have to do is believe. You don’t even necessarily have to believe in God. Believe in yourself. Cause God’s already in you. Whether you believe it or not, whether you like it or not. Us, together, when we commune, when we all get together, that’s God. When we’re alone, that’s God too, but it’s just a little piece of God. We’ve all got God in us… We don’t have to praise and worship God. You can praise and worship whatever you want and he’ll still love you. But what it all boils down to is that he’s given us all the tools that we need and you just need to accept them and utilize them, or learn how to.

Me: Can I ask you a question.

Him: Yeah, of course. 

Me: (Long silence.) I’m trying to be worthy of the things that have happened to me. And you say, “You don’t have to be worthy, you just get to accept it, like accept…

Him: Receive.

Me: …receive yeah. I puzzled over this for a really long time, and I feel like a disappointment to myself. Because I’ve been given a lot of chances to see what you’re saying. And I feel sorry in a way that I’ve been sort of frightened to… to give myself over to it, right? To that deeper understanding.

Him: That’s what I’m talking about, is that you have to accept it. There’s nothing else you have to do.

Me: But I think it’s like, I’m afraid to accept it because I’m afraid that it will make me alone. Like profoundly alone. Because the world believes other things. Like our culture teaches a different story—like that you can’t heal your body, and that we’re dependant on systems to save us in every way: financially, socially, professionally, physically. We’re taught that we don’t have enough in us or with us. I’ve experienced some things that feel like natural life to me, but that people call miracles because they don't fit inside that cultural narrative. And I feel like if I claim those parts of my lived experience, it puts me outside of everything. And I don't want to be alone. I want to be together with people.

Him: You ever get a gut feeling?

Me: Yeah

Him: and it’s always right, right? It’s not a gut-- it’s not your actual gut. People can call it telepathy or whatever they like to make it sound fancy or make themselves feel special, but it’s a basic awareness. We all have it… But the hardest thing for us to do is to let go and receive it. Why? Because we’re human. That’s the human part of you. It’s okay to be scared of that. We’re always scared of things that we can’t see… But once you release and accept... you’ll see. And you can’t stop it. And you already got the light in you. I can see it. I already know.

(Silence)

You came to Oregon to hear this. This is going to heal you more than the doctors are. The doctors are tools to help. You know they’re just a vehicle. You’re more healed than you know. You just have to accept it.

Me: Okay

Him: And it might take you a week to talk yourself into it, but, but you’re gonna get it. You’re gonna be fine. One day we’re gonna laugh at this. We’re gonna laugh at this.

Interpretation

When I requested my medical records from Mayo to send to LA, I read through them. I’m not sure why, as I’ve avoided it before. Too much information when I’m already holding enough. Maybe I had nothing better to do that day, but I sat down in their lobby and read them. I got to the part where the radiologist reviewed and reported on my most recent MRI, the one done in Seattle. The radiologist's report said the MRI showed that the insulinoma had been removed, that it was gone, and there was no further lesion anywhere else on my organs.

I thought about the cab driver and what he said that first day about my “next Xray". My relationship to this kind of thing (as you may have gathered) is complicated, and at times a little confused. I’ve experienced my body healing before from something it "shouldn't" have healed from without medical help, so that is within my understanding of what is possible. But I also don't have an allegiance to that always being the case. Any more than I have an allegiance to doctors always being right. I just allow for both. And in that broader range of possibilities, I mostly try and listen for what feels true. In this case, I didn't really feel like the insulinoma was gone. Because I am still experiencing symptoms, which are admittedly better than they used to be, but definitely aren’t gone. I don't feel healed, I guess. 

I asked the doctor about it, and he seemed startled and confused. He had a different radiologist review the MRI again, and told me they corrected the report. I don't know what it says now, but I will make sure to have another MRI before they cut me open. Just to be sure. 

Right now, I'm waiting to hear back. And listening for what feels true.