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.