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. 

Wildlife

After meeting with the surgeon in Portland, and learning that the procedure there was likely to involve the loss of organs, I took a little over a week to think things over. In late December I made the choice to postpone that surgery and look for a treatment for the insulinoma that might not require me to lose half of my pancreas and all of my spleen. There were then a few days of researching and inquiring (insulinomas are rare enough that not many people operate on them, let alone offer different procedures), then contact with the two places that do offer alternatives to organ removal, and then many days of requesting records to be sent to them and waiting for those records to be received. Then there were more days of waiting to hear back to find out if those doctors would see me. After over a week of not hearing back, I left Hood River for Portland in late-mid January to have the CT done in preparation for surgery, to learn that same day that the one of the specialists I contacted would see me. I got on a train and came to Seattle to meet with him. At the end of my week of appointments and tests there, I learned that the second and last place I submitted my information to will see me too, and I am on the train now to go see them and learn. 

I wrote this entry yesterday, on my last day in Seattle.

~

I am staying on the 5th floor of a concrete building on the side of a huge hill. The room is tiny. Maybe 11x12 feet. There’s a little kitchenette next to a tiny bathroom area marked by a drawn curtain, where the toilet is inside of the shower. Across the room there’s double bed with a sunflower yellow comforter scattered with tiny white flowers, and two large windows that look over hilly streets and pointy roofs and smoking chimneys and the tippy tops of tall pine trees. I can see the Sound on clear days, and at night, sparkling rain falls in cones of light made by the streetlamps. On the handmade shelves above the sink there is a framed picture of the chalk-painted words Home Sweet Home, two hammered copper mugs facing like they’re about to toast, and three books stacked atop each other: Feathers; The Evolution of Natural Miracle, I Know This Much is True by Wally Lamb, and Man for Himself by Eric Fromm. There’s a garden on the roof above me, which looks out across the whole city; downtown, the water, the Space Needle, and each floor has a communal shared kitchen with huge windows that view the same expanse. It is peaceful, friendly place and full of light. There are homemade muffins on the counter downstairs each morning. The password for the free wireless is pleasebekind. To be here I am paying half of what it costs for a bunk bed in a hostel.

I have been happy this week. Sometimes on this weird journey I’ve caught myself thinking I’m not allowed to be happy. That’s partly because of an trick my brain learned a long time ago… the quick, quiet, automatic dismissal of any emotion I feel-- anger, sadness, pride, excitement, desire, joy-- and the thought that I should replace it with some other more appropriate feeling. "This is no time to be scared! Be brave!" "Don't act proud, be humble." "Don't be ashamed, feel proud!" "Don't be down, be happy! "Why are you happy if the situation is serious?" Of all the things I’ve learned to do in life, this habit of cross-examining every feeling is the most destructive. It must be a fun game for some part of my brain, but it doesn’t create any sort of healthy creature. I’m working to undo it.

Part of that work has been to accept a feeling like I accept the weather. To not attempt to control or reconstitute it, but just experience it. That has felt better. And a challenge I've given myself is to share feelings openly here-- even the ones that white-people-culture deems most inappropriate, like fear, grief, and anger. So it's strange to find a hesitation to share joy, because sparkle-sparkle is one emotion my people generally deem appropriate. But I guess it makes sense because it still relates to seemliness. I worry that if I say I have felt happy this week, that will SEEM strange to anyone watching. Like, this is a difficult time and so gladness is never appropriate. Or worse, it will make those who supported this journey doubt its authenticity; wonder if it all was a grand ruse to take an incredibly long and stressful vacation.

I hope not. Because it has been no vacation. But I have felt a little happiness these last few days. A few times this week I have felt peaceful, and glad to be in the world and in my body. Which pretty much feels like everything. Because I am as much about the business of remembering my will to live as I am about the business of finding the right surgical procedure. In this regard, any small breath of excitement about putting my feet on the floor in the morning, any wish to take a shower, or to explore the world outside my window, is something. I think my will to live is the most important resource I have. Without it, the best treatment in the world is pointless.

~

Outside of visits and further tests, I am taking long walks here, on the hills and in the swaths of light that wash across the hillsides after sweeps of rain. Seattle is really beautiful. To my new eyes, it looks gentle and relaxed about itself. The people in public generally seem a little sadder than they do in other cities… they make eye-contact less and seem a little cagey and forlorn, kind of like everyone just got dumped. When I say hi to a stranger they act like a shelter dog being offered kindness: either responding with guarded stand-offishness, or with remarkably hungry hope. But the easy lines of the things people have built here—storefronts, cafes, bars and homes—seem to tell a different story. The places themselves radiate a relaxed, assured, generous confidence that feels gracious and kind. Seattle seems to me like a strong and graceful dancer—one who built her body through a joyful practice, and who might be going through a sad spell, but her body remembers her better days.

At night I am reading a book by Larry LeShan. He's one of a handful of cancer doctors who long ago became a student of his patients, and allowed himself to not just consider, but to study and document the emotional and soulful aspects of the disease. He studied people who got well, and people who didn't, and made the very gutsy step of documenting correlations that he found. I first read him when I was healing from the brain tumor. The other day, I went looking for him again.

"...She said she saw no possibility of doing the work she most enjoyed, of living where she would like to, or of a life that would make her glad and excited to get out of bed in the morning. She was successful enough by some external measures, but devoid of a sense of hope or possibility for the life she most wanted to be living. Rather brutally, because I felt I had to shock her into taking some action on her own behalf, I asked her how she planned to continue nourishing and supporting other people in the style to which she’d grown accustomed after she was in the cemetery, because her prognosis was so poor. She looked completely defeated. After a long pause she said, 'I know I can't do it anymore. I had hoped that you would know a road for me.' Her sadness and despair moved me deeply, and for a few minutes we both sat there.   

I then said that I could see no reason for her body to work hard to save her life. No reason for it to mobilize her immune system and bring its resources to the aid of the chemotherapy. By her actions, she was telling her body repeatedly that it was always someone else's turn and never hers, as she continued to support others in thriving and pursuing their own dreams. Everyone else would be taken care of, except her. She was telling herself that she was not worth fighting for. We agreed about this message and sat in companionable silence for a while.  

The single thing that has emerged most clearly during my studies and work within these hospitals, was the context in which the cancer developed. In a large majority of the people I saw (certainly not all), there had been, previous to first noted signs of the cancer, a final loss of hope in ever achieving a way of life that would give real and deep satisfaction, that would provide a solid raison d'etre-- the kind of life that makes us look forward zestfully to each day, and to the future. Often this lack of hope had been brought into being by the loss of the person's major way of relating and expressing him or herself—a spouse, a career, a form of creative expression— and the inability to find a meaningful substitute. With some I worked with, there had been no objective loss, but there had been a marked and profound loss of hope that the ways they did have to express themselves would never bring the deep satisfaction that they wanted. No matter how successful they appeared to others. Over and over again I found that the person I was working with reminded me of the poet W.H. Auden's definition of cancer. He called it "a foiled creative fire."   

One question that is frequently raised when I talk about psychological factors in the origin and development of cancer is “Does that mean that having cancer is a person’s own fault?” My own strong and unequivocal response to this is “Certainly not.” All of us, as we develop in life, find ourselves entangled in emotional and social traps. In our childhood we have so much to learn, and very early, with limited experience and an unfinished brain, we have to learn things about how to regard ourselves and others, and what being a “good person” means. Sometimes the traps we fall into are of such a nature that they put, over a long period of time, intolerable stress on our body. The cancer-defense mechanism, which is a part of our immune system, may be weakened by these stresses.

According to the best theory we now have, we all get cancer many times each day. As the billions of our individual cells divide and multiply, some lose their coherence with the rest of the body—their ability to maintain the relation with the organ they are in is destroyed. This happens repeatedly, but our cancer defense mechanism quickly takes care of the situation. The strength of this mechanism is originally set by our genetic inheritance. But its strength can be weakened by a number of factors. Some types of coal-tar products are known to weaken it. Radiation can make it less effective. And at least one type of long-term emotional stress can lower its strength. The specific type of emotional stress that we have documented as having this function is: the loss of hope that one can ever live their own life in a meaningful, zestful way. That one can relate, be, and create in the ways most meaningful to themselves. Over a period of many years, I have found this pattern of significant lost hope in over 80% of cancer patients, and in only 10% or so of the control groups."

This resonated a lot with me. People close to me know that I have had a bone-deep sorrow over the last few years, and a feeling of hopelessness about my life that followed a trauma. We all go through hard things. I have been through other hard things, and none of them as hard as what many other people have experienced. I have no delusion that I’ve had comparatively great losses. What was significant about the change a few years ago was not the experience that triggered it, but the feeling of giving-up that it brought. It felt like the end of my hope. Like something in me lay down and never got back up. 

We keep going past times like that, but we are not the same. Or, I wasn't the same. I don't even think I was depressed. I still enjoyed being with people, worked hard at things, found pleasure in teaching, and saw beauty in the world, but everything made me tired. Without a feeling of possibility for my own life, every action became a depletion rather than a nourishment. Without a sense of possibility for my self, every experience felt like energy going out and nothing coming back-- as much as I took care to see the goodness in anything, or let life nourish me. I was exhausted. I imagine this feeling also largely came because of the insulinoma (it makes too much insulin, which consumes too quickly the glucose/energy that should be available in the blood, so that the brain, muscles, and central nervous system are starving for the fuel that they need to function… which is the literal definition of exhaustion). But it is all part of a whole.

~

When a life-will wanes, I wonder who, or what, says that we get to stop whatever we are doing and perform a rescue operation. What says that one life gets to have the time and money and effort it takes to save it? Privilege says that we do, I guess. Riding on this train out of Seattle, I just had dinner with two women who were great. One of them is an administrator in Williston North Dakota, a town that has seen the explosion and deflation of an oil boom, and was demolished by the descending of 250,000 new resident workers over the course of two months. Where before there’d been schools and farms and a main street with family owned businesses, there came a Walmart, 400 water rigs driving in and out of town every day, skyrocketing home prices ($7,000 a month rent for a three bedroom home, $2,500 a month for a studio apartment), the closing of all local businesses downtown, the establishment of “Man Camps” (tents, shelters trailers) to house all of the town’s new residents, a boom in prostitution, rape and murder (over 100 people killed and 50 people “disappeared” in the last two years), and the evacuation of most of the town’s residents whose families had lived there for generations. This woman works 7 days a week in the fracking industry, because it is the only business left in town, and laments that she’s now down to just 50 hours a week where she used to be working 80-90, because she still can’t afford health insurance for herself and her kids.

The other woman is a traveling nurse from the Philippines who works half of the year at home and the other half as a Nurse Practitioner on Souix reservations in the US. On the reservations, she sees the crumbling of a social structure belonging to the people of a “conquered nation” as she says, and likens their situation to that of her home country of the Philippines during the years they were considered Spanish territory. She says that she sees a sea of despondency, drug use and declining health, and that at her own job there has no medical equipment available for difficult procedures, and that because of lack of medical resources and health education, the average life expectancy of people on the reservations is 45 years old. This nurse can’t afford health insurance for her or her son either, and like the woman from Williston, she is financially penalized for that fact every year at tax time. Both of these witty, smart, wise, hardworking people have experienced the world as a place where they can work incredibly hard and not be able to meet their basic needs. For them this is how the world is. 

When I listen to these women, I also think of my friends. Most of them are in positions of relative privilege—perhaps 60% white and mostly middle class to owning class—and wouldn't have any difficulty accessing medical care, or have any hesitation to seek the best treatment for themselves or their families. These friends are far from the “1%” in this country, but they live within a narrow margin of existence that lets them have their basic needs met, while also enjoying things like owning homes, having health insurance, savings, new cars, healthy food, art on their walls, money for gifts at holidays, vacations, college funds, ipads, and—most luxuriously, most importantly—the pursuit of their dreams and passions: those things which ignite and inspire their personal hope and zest for life. My friends are architects, surgeons, publishers, CEOs of companies, video game designers, professional comedy writers, tech gurus, futurists, columnists for the LA and NY Times, theater directors, college professors, producers, book authors and small business owners. They pursue what they want. And while they most assuredly have real struggles and uncertainty, they also experience the world as a place where it is possible that their hard work, determination, patience, passion and skill can be met with the rewards of success. For them it isn't a place of guarantees, but it is a place of possibility. For them, this is how the world is.

I listen closely to these stories about How The World Is, and I struggle to reconcile that all these stories are true. This isn't a new thought for me. But it is an eternally mind-breaking one. Because no one chooses to live inside of one of these stories. By its nature, a This Is How The World Is story describes a person's firm understanding of the physics of action and reaction in their lives; what is possible or impossible in the world when you give your best. I’m left to boggle over how these stories can continue to go on side-by-side, and all be absolutely true. 

And I wonder what entitles me to traverse the boundary from a world where needs are not met, to a world where they are? What makes it so that The Way The World Is for me, is that I get to have health insurance, and get to travel to seek a better treatment? Why do I get to have that when these women don’t? Especially given my own recent lack of conviction. I know it is literally because of the generous miracle of crowdfunding, and the way it allowed many friends to pool manageable loving donations into one large protective cushion. And, it is because of my stipend through Obamacare. I am one who, if it hadn't been for that, there would be no medical resource right now. These are the real, practical reasons. But the financial details plumb deeper questions. What lets a person feel like their own life is worth saving? The people I know who are comfortable with money more easily advocate for their own lives without reservation or hesitation. And I see this as healthy. I see that feeling of entitlement as vital to survival; feeling the right to fight and save one’s own life by any means. But the people I'm close to without much money often hold a different viewpoint. They think about what God has in store for them, and the natural process of their bodies breaking down. They feel conflicted and ashamed about seeking medical help. Sometimes they feel like they don’t deserve it. Like if they got sick, it’s their own fault for not being strong. And like their lives aren’t worth rescuing if they can’t afford to pay the cost.

I find myself somewhere in between. My will to be here was already wavering. And getting behind saving my own life sometimes feels like more resource than I have. Which feels like a horrible thing to say out loud. But something I know for a fact is that if a person does get behind saving their own life—health insurance or not—the effort is no small thing. Whether we seek medical help or don't, changing a trajectory towards death to a trajectory towards life is an endeavor. It isn’t just magic words and a little more broccoli (although maybe it is exactly that for someone). It means whole-heartedly aligning with the life that wants to be lived, and providing conditions so that life can grow stronger and thrive again. It means being all-in. 

~

Yesterday I took an intuitive walk. It's a thing I’ve done since I was little, but haven't done for about a year. I go without a plan, but with the intent to make any turn based on a natural feeling of desire. The practice is to listen for that thing that feels like joy or curiosity...want... and follow it. I probably started it as a way to escape the overlay of self-criticism, and have a chance to just watch what happens when I trust my nature. When I do this, I come upon things that are better than anything I ever come to through strategic planning.

I stood on the hill and looked around. My eyes found a big cathedral halfway down the mountain, and I felt a little burst of excitement like desire so I went. I walked in the general direction, crossing through old overgrown parks and down lanes of weirdly tropical-looking ancient trees and along winding streets with tiny bungalows cuddled next to each other. Walking in the hills and light and clean bright air, I felt that small happiness. Finally reaching the cathedral, it was odd inside. It was enormous, cavernous, and filled with giant windows and light. But had more the feeling of a hollow hanger than a sanctuary. It looked the same as others, but felt different. Like a place that had been traumatized, and was slowly being mended. Like a place where nature is growing back after a bad fire.

I went into the lobby to read about the history of St. Marks, and learned that the giant cathedral was unfinished around the time of the Great Depression, and the Episcopal church that was building it had to give it up. The U.S. military then took possession of it and used it the inside of the building for many years as an anti-aircraft training facility. Several years ago the church was able to reclaim it, and have been repairing and restoring it ever since.

I walked out and along the edge of the parking lot and looked down at the view that the founders of this place had chosen for their church; the water, the valley, the mountains. Then I noticed a little path leading down into a forest. I felt a wish to go down so I did.

The path quickly turned into a woods that lay in the cut between two mountains. Flooded with late afternoon sunlight, it had the deep, earthy quiet of a mossy glen a hundred miles from civilization. I followed the path past ferns and ancient fallen trees covered with lichen, into the smell of green and earth and water rising in the warmth. I thought of the life there, and how it goes on by itself without doctors, until it just doesn’t go on anymore. How it lives until it’s finished living, and doesn’t use medical intervention. I wondered about forms of natural life that people intervene to save besides our own. And at first I envisioned sort of frankensteinish, biosphere-like life support systems to keep nature living on artificially, and that made me sad.

But then I thought about times when humans intervene to help nature and it's good. And how that usually involves protection or rehabilitation of wild life. I thought of restoring wolves to Yellowstone, and oil-spill clean ups on beaches, and the nurturing and repopulation of endangered species. I thought of childhood rescue stations for birds who'd been attacked by our family cat. Protected places for natural life to recover and regrow. 

In the heart of the ravine I came to a creek and an old wooden footbridge built across it. And I heard, or thought something say: But remember it is still the life-force inside of a thing that determines whether it will die or recover once it receives assistance. And I wondered in reply, “What is that life-force?” And the answer was, “It is you. As long as you are alive, you are that life.”

On the foot bridge, I stood and watched the little river run below me for a long time. And then I asked it to take anything that led the natural life in me to wane. I asked it to take anything that has brought me to feel I'm incapable of having my life. I asked it to take my hopelessness.

~

Today I’m on the train to visit the last place I found that may offer a different treatment for insulinoma. I am hopeful and also scared. Scared for more appointments, but also scared to go back into the cold heart of the country and leave this place where my life-force started coming back a little. Here are pictures from the creek at the heart of the woods. 

Gravity

If you know me, you might know that I like being in the world. I'm made pretty glad by "small things". I like when a stranger holds a door. I like how bad weather makes commuters act like we're all in it together. I like the rainbows that the sun makes in my eyelashes when I’m not wearing mascara. I get down on my knees to look at snow when it’s doing that sparkle thing at night. (If you look close then, you’ll see that the regular snowflakes are dusted through with flat, glassy cut-outs of shiny snowflake-shaped confetti.) I like when I can see the stars, and I like the glowy orange sky above a city where I can’t.

I enjoy milestones and accomplishments too, but the best joy sometimes comes with seeing a bird taking a dirt bath or a person shoveling a sidewalk. Since I was a kid I've felt the most happiness in those slim glimmery moments when I'm awake enough to realize that I am here... even when nothing is being won or achieved. 

Sometimes when I feel that joy, I write. It's like a sort of flood-control system; a way to catch some gratitude and make something of it before it spills back into the ground. It's also a way to feel like I am sharing that joy with someone. 

Here’s an example of a time like that. It’s from a few years ago when I first came to Chicago temporarily for a job. I wrote it as a reminder for myself-- or for anyone who might need it someday.  

Just for tonight, have all of this. Every bit of being that is here with you. You may have spent a lifetime—even time before time—asking for everything you have now. You may have longed for it so long that longing became a habit. Wishing, wanting, waiting, hoping to have a life. And now that you have life, you still want it. You still get caught up in wishing you were here, wishing that you had it all.

So just for tonight, maybe try not to touch anything with longing, but with having. Let your hands run over the softness of the blankets that keep you warm, and listen to the sounds outside that sing you to sleep. Let yourself have the gentle motion of your breath, and the sweet familiar smells of nighttime that normally slip kindly into your nostrils unnoticed. Have the cradle of the gravity that holds you perfectly, helplessly here because of the impossible spin of a globe around a star that keeps you, even when you’re sleeping, even when you can’t see it, but are being carried on your way back to face it every day, nevertheless. 

Let yourself have that to start. And if you can stand the ridiculous reckoning that having it brings, have everything else. Have every friend and family member who has ever spoken to you gently. Every eye that has ever shined because of you. Every person who has carried a part of the world’s great love for you in their heart. Have every kind word that has ever been said to you. Every single time someone has held your hand. Every phone call someone made, or almost made to you. Every time you ever made someone laugh or catch their breath. Let yourself have every single word anyone has ever used to say “I love you”. Have all of that, plus every prayer any person has ever said for you while they were falling asleep. Because all of that is yours. It is for you. 

And if you can handle all that, then keep going and let yourself have every generosity that has ever been given between members of your species! Let yourself have every place that exists right now, tonight, that breathes and sighs and churns and runs and bleeds and grows and freezes and blooms. Let yourself have all the rivers running quietly, all the traffic caught in tunnels, all the laundry left hanging on lines over cool, sweet, cricket-filled grass. Every glass toasting and every street full of the smell of bread baking, or lined by sidewalks that so many women have walked down, linking arms; so many men have walked down, laughing loudly, so many women and men have walked down, holding hands. Let yourself have every star that shines in the sky. And every wheel and every spoke of every wheel that was ever made to move you safely from one place to another. Have every hand-tooled detail of every building you live in or work in or learn in. Let yourself have all the labor and generosity and care that has gone into every meal that has ever been gathered and made and served to you. 

Have every bell ringing and every cheek being kissed, every wound healing and every bird nesting in the night. And every instrument that was ever made and was ever found by a nine year old person. Because all of this is yours. And all of it is here with you, along with all the candles being blown out in churches and mosques and temples, and night flowers blooming and lullabies being sung. Let yourself have every single lullaby being sung in the world tonight. 

These are just a few suggestions. There is so much more we have. Tonight walking home, I let myself have my hands, and my breath on this cold night. And the bright street lights reflecting off wet roads and the sound of passing tires, and I let myself have the long, high cathedral of trees above the street, shining wet and drawn black in a million fine lines against the glowing city sky. And I let myself have the water that fell out of the sky and on to my face, as snow, as mist, as rain. And I let myself have my face. Like it is my one and only. Like it is exactly what I asked for. Like all of this is exactly what I asked for. I let myself have it. And it felt like the single most radical, most irreverent, most revolutionary thing I could ever do.

I used to write that kind of thing a lot. Not exactly like that, but a lot of the adventures I chose to make into stories or performance had at their heart a certain winding up at home again, or reckoning with the so-much-more-than-enoughness of pervasive daily majesty. I wanted to give voice to the part of any of us that takes pleasure in just being here. The part that is inexplicably dazzled by being alive. It is a young, beautiful, wise old thing in us, and I think it can go quiet and get lost. 

I stopped writing recently-- for about three years-- because I stopped feeling joy like that. I went through a heartbreak that was a doozy. It was a time that broke my trust in things I had trusted, both in myself and in the world. The loss was of a big love and some common friends who had rejoiced with me in the mundane. They were people who went on planned or ambling adventures with me, and laughed with me like children, swam in the lake and danced for the moon and gathered others for stories and games, and fell asleep on rooftops together under the summer sky. They joined me in the dazzled gratitude that I'd always felt oddly alone in. And with them, I didn't feel alone anymore. After they were gone, each time I felt joy rise up, it was quickly joined by grief at the loss of them. The pain filled me up like a dye that reached into my bones. and it did not fade with time. I stopped wanting to feel joy because of that pain that rose with it. Without joy life got different, and I stopped writing.

~

This blog has been different. I started it with a choice to write about ugly and miserable things. Fear and anger and grief. Perhaps just because I wanted to write again, and they grimmer stuff is just what's going on. Waiting around to feel Awash In The Magic before I picked up a keyboard wasn't being super productive. So I decided to write right where I am. Which has been akin to (or maybe just another way of) learning to join and accept myself in hard places. In the classes I teach (Acting, Live Lit, Storytelling and Improv), I tell my students all the time that every emotion is welcome in performance. And that an artist who shares any aspect of honest emotional experience without shame or greed is giving a gift. I see this as true off-stage as well. Online and in real life, I see people sharing challenges openly with less shame, which helps others to feel less alone with whatever their challenges are—quitting smoking, battling depression, addressing racism or sexism, recovering from abuse or betrayal, getting fit or losing body shame. With less shame, it's easier to support each other and be supported. It is good to know that when we struggle we are not alone. 

One of the things I have been ashamed of, but am coming to accept, is the fact that I have been sick a lot in my life. Not in a way that is as difficult as many people experience. All bodies are different and I feel like any discussion of this requires a disclaimer of real gratitude for my health, to say that I realize a lot of people have physical challenges that are far more challenging than mine, and handle them with far more grace. I don’t pretend to feel sorry for myself. I just am feeling tired of being in my body right now. And rather than keep that a secret, I’m going to talk about it a little.

Right now I’m tired of my body hurting and not working and being sick. I’m tired of how badly my back hurts with this scoliosis that I’ve had forever. I hate that the pain wakes me out of sleep. I’m tired of the hole in the cochlea of my inner ear causing the ringing, pounding, throbbing, pressure and vertigo… telling me I’m flipping, spinning, falling on a daily basis if I’m not careful to avoid bending over, coughing, or laughing. That thing with my ear has been happening for over eight years now, and I am tiiiiired of it. I am tired of every cold I get morphing into a sinus infection because of my deformed sinuses. I hate sinus infections. I hate the headaches and pressure and fever and having to be put on antibiotics twice a year. 

There have been other things that I hated while they happened, but that now, because they healed, I don’t really hate. Healing is a pretty amazing experience, and it can make you very grateful. The acute case of mono I had as a kid that damaged a heart valve that took 5 years to repair itself… intense migraines in my teens… a brain tumor in my early 20’s and the seizures that accompanied it… an intestinal parasite that lasted for 9 months and turned me into a skeleton before they tested & treated me for it in my late 20’s… pericarditis (swollen lining of the heart) and a lung infection that last three months in my early 30’s. These things all passed. And they were awful while they were happening, but also not so awful. They left me with understandings that I will be grateful for forever.

But the lot of them together has left me feeling ashamed. Like my body is weak or faulty or broken. Especially right now, when I am dealing with yet another thing. The insulinoma (pancreatic neuro-endocrine tumor) feels like too much sometimes. Like after everything else this is more than I expected, and more than I can handle. All these things together can make me feel that the vessel I’m in isn't fit to carry me though life. It can be sometimes hard to love life when you feel like the part of life that you are, is faulty. 

Worse than feeling physically unfit, though, is when this history makes me feel that I am morally, willfully or mentally weak because I have “allowed” or “caused” these things to happen to me. Even for people who don’t partake in any New Age philosophy that espouses the idea that we create our own illness, it is common to treat people who have variable constitutions like they are somehow weak-willed. To get frustrated with them for their “choice” to be sick, and be annoyed, impatient, and even skeptical when they get sick... again. Maybe we want so much to think that we are in charge of what happens to us, that we prefer to think others are causing their own misfortune. That blame—spoken or unspoken—is the worst part.

~

There was a small boy I’ll call Joe who I taught for several years in San Francisco. In his infancy, Joe had refused to take any food into his body. He didn't have digestive problems, but like some other "failure to thrive" babies, seemed to lack a will to eat. His parents had to feed him through a tube until he was five years old. Even after he started eating, he often “gave up” on it, and refused to take nourishment for periods of time, like at some fundamental level, he just didn’t want to be here. Joe was a great student. Wide eyed and creative and joyful and gentle. One afternoon when he was in first grade, after an Improv class his classmates rushed outside at the bell, excited to play touch football in PE, and Joe stayed behind sitting with his head resting on his hands, and his elbows on his knees. I sat down next to him and asked how things were, and noticed that tears were dripping off his face. I leaned back and invited him to sit in my lap, and he climbed on and cried. After a long time of sobbing with my arms around him, he simmered down a little bit and I said to him, “Tell me, Joe.” He spoke softly, with more tears between words. “I don’t want to play football… because it hurts. It hurts my body. And I don’t, really like that. And I don't... get why that doesn’t bother anyone else. I don’t know why I am the only person who doesn’t like this.” “Like what?” I asked him. “This,” he said, opening his hands wide, and then patting his arms and legs. “I don’t like being in this. Being in a body is really scary! And it hurts sometimes.” He wept some more, and I told him that I understood how he felt. He leaned back and looked at me with wet eyelashes, and I said that I felt scared being in a body sometimes too. He sniffed and dried up a little, and I said that maybe more people than us even felt that way too, but they weren’t as good at describing it as he was. Because it is a hard thing to describe. It seemed to lighten him a little, to think that he wasn’t alone.

I think of Joe at times like this. About his quiet confession. And how it was the only time I’d ever heard anyone say words close to how I feel sometimes. How it made me wonder too if anyone else ever felt like us. For me, the feeling of not liking being in a body comes when I’m sick. When my body feels well, I love being here. The few years of good health have been the most productive, daring, joyful times of my life. When I’m sick over a long time, my body starts to feel less like Me, and more like a Place I don't belong. And all through my life, rather than reach out during those times, I have tended to isolate myself. Precisely because I've gotten sick in repeated and varied ways, I am afraid my loved ones (who tend to all be outlandishly healthy and strong) will think I am weak-willed, flawed, fragile, or like I am making things up, seeking attention, or possessing some sort of moral inferiority. Which is even worse than being sick, to have people look at me with those eyes. So I have kept quiet in those times, and been ashamed.  

Which, I'm really thinking lately, is the worst part. Feeling ashamed and being alone in the midst of what's already difficult isn't the best idea. I am thinking that, just like with everything else, it is better to accept this part of myself and even to be open about it. I have been sick a lot in my life. And rather than feel like that's my fault, or something to hide and keep secret and worry that I'll be judged for (and I may well yet be judged for it), I can at least accept it. Not expect more of it. But accept it as part of my history. Because maybe too that's been where some of my best traits come from... patience, confidence in my resources to heal, awareness of forces that do, appreciation of subtlety, empathy, articulation, intuition, humor. Sometimes I’ve been super heroic and strong and miraculous in response to being sick, and sometimes I’ve felt totally hopeless and overwhelmed and really scared. But all of it has given me things that I have given you, and has made me myself. 

~

Today I miss the park in Chicago that leads from Berwyn to the lake. I miss the willow trees and community garden there. I miss bumping into friends and colleagues and students and fellow artists on the streets in Andersonville and Old Town and Logan and everywhere else. I miss a place that I helped to contribute to and make during my time there. I miss so many things that we do. I miss performing and I miss teaching. I miss the buildings filled with joy. I miss the weirdos who set out on bikes with me, looking for the lake or for the sky. I miss the stories and the rooftops that we used to grace, long before I left. I miss things I wasn’t even doing there. I want to go dancing when I get back. I want to lift my face up to watch the snow fall. I want the moon over Lake Michigan.

Here is a piece to close that may be unrelated to all of this, or that may be totally related in some way that I don’t see yet. I’ve mentioned the moon here a couple of times, and so maybe that’s what conjured it. Or maybe it is talking about dark sides of things. Or what comes after acceptance. Anyway, here it is for me and you. It came a year after the piece I included at the beginning—the one about “Having”. This is from after I’d moved to Chicago was struggling to find work and stay here.

I lay on the grass near the beach tonight, like I’ve lay myself down there many times this month. I am frustrated that I can’t feel the beauty that’s around me. After all this work to get to Chicago and stay, I feel guarded, cagey, and numb. A glorious city on the edge of an inland sea on a gentle summer night, and I won't allow myself to have any of it. I can't even really tell what this moment feels like because there is so much unsettled! No job, no savings, no safety net, no food at home, nothing... I could lose being here at any moment, and have to leave and go stay with family in Arizona, and I don't even know how I'd afford to get there. So I can't let myself have this. I can’t be sure it’s mine.

I get up after a while. Feeling angry about being numb... I wish I could feel something. I stand looking at downtown’s reflection in the glassy water, wanting everything that's right in front of me. Frustrated with myself for withholding like this when I know better.... and then... I just forgive myself for it. Because, whatever. I can forgive myself for being guarded and a little numb. It's understandable during a stressful time. I accept my guard, and decide to walk along the beach. 

I've been good about walking, even when I don’t feel like it. And I have not felt like it. Moving my body lately hurts so much it makes me want to cry, and I would rather hold still and stare at a computer screen all day. But I do it anyway. It's keeping me healthy, and crying is good for me. So I walk. Tonight I walk along the beach. I look down, and concentrate on the fact that walking in deep sand is good exercise. 

But then I wonder why the moon’s not out yet, and what time it is… figure there’s some organizational, strategic income-finding effort I should return too, so I turn around start trudging back. Then... I feel some tiny wish from somewhere wordless in me, to just stay on the beach in the night, and the words “Let it be happy without knowing why”. 

This stops me in my tracks. I remember the words from the time when I when I was healing from the brain tumor. “Let it be happy without knowing why," is a lesson old and quiet, and important. It means to let whatever animal or spiritual nature there is of me experience joy and pleasure, even if I have “no logical reason” to be happy. 

So I walk out farther on to the quiet beach. I find a soft pile of sand, ask for a moment what my body might want, and then I do it. I sink to my knees. It is dark now so I’m hoping none of the summer people running or biking on the path up the beach behind me can see me come to my knees on the sand. I don't know why I'm doing this, other than that something in me wants to. 

The sand is cool. I start to feel some faint, upside down trickle of exhilaration, like ribbons of water flowing up from the sand through my knees… I remember a quote from someone, Mary Oliver maybe, “Let the soft animal of your body love what it loves.” Without reason or understanding, I stop thinking for a little while, and let my body have what it wants. I just want to stay here. 

So I stay. I breathe deeply. Stars are coming out, but it is black out over the water. I remember the moon, but she's still nowhere to be seen. The air is soft. I sit leaning against a volleyball pole near the water. My eyes soften and look around like I am letting them look for the first time since I moved here. They are hungry and shy: afraid to see this place and want it. But then I remember that even if it all goes away… even I don't find a job and have to go home, even if I can't lay claim to anything... I have it all right now. I really do have it all now, because I am here. 

I breathe out and give myself back to the world. I give over to the smooth sand, the cool breeze, the sparkly buildings, the warm night and the stars, and I let myself have everything. I feel it all. I love it. I smile without knowing why. And then I see it. 

Red like a dark cherry. Or fire on water. Deep, rosy, smoky crimson red. And enormous. Rising over the black lake like a gigantic balloon. I don’t even know what it is. I sit up straight and whisper “What is it?” A gigantic red, glowing, hovering thing, just above the edge of the deep, black horizon. And then I know it is the moon. Her arrival over a body of water. And I see it now like I am seeing the moon for the first time in my life. Open, and unguarded, I am astonished by the rising of this thing. Blood red and enormous over the ink black of the lake. It moves up behind what must be a body of low wispy clouds, because the face is warped, distorted, ballooned for a moment… but she rises through every layer, until she is free and clear above it all. 

I sit quiet, watching the actual movement of the moon with my eyes, which I’ve never seen before. I sit with my spine and my hands rooted in the cool of the soft sand. I am stunned, awed, slow enough to see. 

“Ask me a question,” she says. "Here I am." 

I feel entrained. In time with the turning of this blooming sphere. Here I am, too. 

“Who are you?” I ask her. “I am the witness,” she says. 

“Why have you stayed?” I ask. "Because I love what I see," she says. 

“Teach me about love,” I say. “It is gravity,” she says. “It is helplessness.” 

I don't like this answer. 

“But you are beautiful. You are everything!” I say, “How can you be helpless?” “You have to know that you are everything in order to be helpless,” she says, “or beautiful.” 

A flock of geese fly fast over my head, flying east over the dark water into the dark night, toward nothing but the bright red moon. Then another flock comes, and then another; flying fast. I can’t imagine where they are going, flying out to sea. There is no land out there… no eastern summer destination. But there is the enormous moon. And an open infinity of space and speed and reflection on the way to her; just clear open night between the water and the sky, in which to fly. To just fly and fly and fly. The air is cool and it is warm; a perfect night for flying. I imagine what it would be like to fly collectively, to have some flock of feathered friends and family to strike out into the far, wide black of a night over endless water, into that silent, vast place… with nothing but time, and speed, and infinite room, and the love of a full red moon.

Rage

Oregon is beautiful and I am staying with sweet friends in Hood River, an hour outside of Portland. I am in a warm, bright, cozy little loft next to their house, and I am happy to see their faces when we cross paths at night. They are gentle, loving people. I also have the time and privacy to reflect and sleep well and take walks. It is cold and rainy every day and it is dark at night, without city lights to turn the sky pink. Sometimes when I am in the woods, I remember quiet.

I am also something of a mess right now; a mess that doesn't match my lovely surroundings. I started to say to someone the other day that life just sucks right now, but then I realized it is more accurate to say that I just suck right now. I feel like I should be reveling in the nature here, and the rest of this time away from work. But I'm not. I haven’t been outside much in the last two weeks since the biopsy under anesthesia. I went into the procedure with a sinus infection, and woke up with a chest infection (they say it’s normal to inhale snot under that kind of sedation, so the infection in my sinuses moved into my chest). I’m on antibiotics but they don’t seem to be helping much. I also came out of it with a thrombosed (punctured/swollen) vein where they inserted the fluids and sedation, so my left arm is swollen like a heroin addict and hurts like a mother fucker because there are blood clots in it. The anesthesiologist also said that some of the fluid sedation may have leaked through my punctured vein into my arm tissue, and is slowly releasing itself into my body over days, which could be why I'm so grim and tired. Or maybe I’ve been low because it keeps raining, or maybe it’s the insulinoma/low blood sugar deal, or just because I’m not exercising enough.

Or maybe I feel low because I have a decision to make that feels impossible to me, and that I have yet to feel a sense of clarity or agency in relation to. 

Here’s what was learned from the surgical test. First is that the tumor is confirmed to be what they thought it was, an insulinoma or insulin-producing neuro-endocrine tumor on the pancreas. It is almost certainly not cancerous or malignant. Insulinomas are benign 95% of the time. It is less than a centimeter in size, and is a “perfect circle” (which is unusual and strangely pleasing to me for some reason). It was also confirmed that there are no other tumors on my pancreas or surrounding organs, which is incredibly good.

I also learned that the physical symptoms I’ve been experiencing are directly caused by the insulinoma. Now that that diagnosis is confirmed by the biopsy, they are willing to say that all of these things perfectly fit the bill. I’ve been told that surgical removal of an insulinoma creates insulin-related symptom relief in all cases when a procedure is successful.

What makes the decision difficult, is the fact that I have been told that the most likely type of surgery I will have is a procedure that removes a large part of my pancreas and all of my spleen. And this is not something that I want. The loss of large parts or the whole of these organs holds the potential for life-long consequences that are as difficult, or more difficult, than what I'm experiencing now. So maybe needless to say, I don’t want to lose them.

I am definitely tired of feeling this way. But not sure if I’m tired enough to risk doing something that could make me feel worse. I don’t want to feel worse in my body than I do now. And in a case like this, where an answer isn't clear, I have only ever had success with relying on something like an internal compass. A feeling of intuition, or rightness, inexplicable lightness, or a sense of feeling one possible scenario as home. I am searching for that internal sense of direction. But I don't feel it. I just feel stillness. I feel no clarity about how to proceed. I can't seem to find that feeling.

~

I started period of silent meditation a few days ago, in the hope of finding it. And I’d like to report that I am rising with the sun and meditating three times a day and taking long walks and journaling and doing yoga and writing creatively and generally making the way open for clarity to appear. But that is not what’s happening. AT ALL. I am more like wasting an endless number of hours watching The Young Turks while occasionally eye-balling my spreading thigh fat, and marveling at the xenophobia and fascism that have sprung up among my countrymen in the short time that I’ve been residing in the rural mountains. I’m eating a lot of snacks. I am also spending a seemingly endless number of hours raging over my entire life’s history of relationships with doctors. People I’ve gone to for help in the past only to have them pat me on the head and say “you’re a smart, sensitive young woman and nothing is wrong with you," for months or years until they finally TEST me for what I came in concerned about, and find that it was indeed the problem.

Like with this insulinoma. I was concerned about my blood sugar crashes three years ago, and with blood sugar test results in the 30s and 40s (super low) from as far back as 2012, I asked for help. But no doctor bothered to explore it until I pressured them to this summer. Or like with the brain tumor I was finally diagnosed with at 21, which I went to the doctor about for a whole year prior, explaining that I felt there was a tumor there (I was too young to know that you have to pretend to not know things about your own body, and let them think they figured it out for you). For a whole year they told me I was "stressed out" and "having migraines" until I had a big enough seizure for them to give me an MRI and they found it. Or like the parasite I had for nine months—NINE MONTHS—ten years ago, after I went swimming in a lake in Tennessee and swallowed a bunch of water. For nine months I had diarrhea, and lost pounds until I looked like a walking skeleton. Each time I went in asking for help, they told me I “must be stressed” and that I should “eat some bread” to settle my stomach. When I finally couldn’t stop vomiting one night after NINE MONTHS of this, a doctor on-call finally ordered a simple stool test, and found two water-borne parasites. They were gone after two days of antibiotics.

I know well that I am not the only woman who has been dismissed and disbelieved about her own body in the history of medical science. When women's awareness of our own bodies is somehow, for some reason, written off as sensitivity or imagination, an institution that is meant to support and aid people becomes something of oppressor. Being told by an expert in a position of authority that you don't know your own body, and that you can't trust your own mind, is destructive. Western medicine has a long and impressive history of treating women as Invalid, as incapable of discernment. It also has a a sad history of using invasive technologies to control or cure women of things that they didn't ask to be cured of. (If you're confused, google Rosemary Kennedy.) There are echos of that paternalistic history that can be hard to shake off. And I seem to have enough rage about my own experience with these behaviors to fill an ocean. 

It sucks enough to be sick. It sucks even more to go looking for help, and have an expert tell you that you're wrong about your own being. I am furious about lifetime of experts telling me that I don't know my own body. Ten punches to the pillow for every time a doctor has ever said that I am a Sensitive Young Woman while I waited months or years for them to give me a fucking test that confirmed my feeling and let me get help. Ten punches for every person who ever looked at me and thought,“You don’t get to be the authority on you. Because of this white coat, this degree, this title, I get to be.” Fuck them all. 

*

Another thing that I'm twisted up with rage about goes hand in hand with that medical mistrust of my ability to sense a problem. Which is the out-of-hand dismissal of my ability to participate in a problem's repair. Just like I know when my body is sick, I can also participate in helping my body heal. Whether or not we are in conscious relationship to it, we all have an awareness that can direct that process. That isn't acknowledged much by doctors, if at all. The idea of the mind/heart/soul's relationship to physical health is sometimes mentioned like a cheap plattitude ("Attitude is everything!") on posters in doctors' offices, and forgotten about otherwise. This subject is a whole other can of worms that I won’t open fully here, but it is something I am also REALLY ANGRY about. To me, participating in a healing process opens up a landscape as rich and potent as dreams. And it defies the popular idea that our only resources are external and must be paid for. Doctors don't have to foster that relationship, but they sure as shit should not discourage it. Because trust in ourselves, in our discernment, and in our life-force, is a resource that we need when recovering. 

I should pause here and be clear that the doctors here in Oregon are great. Not only are they wise and skillful and greatly respected, but they are also gentle, kind, and respectful of me. They are rare and smart people. But even in the offices of the nicest doctors, there is an accepted transference of authority over a body. Which is difficult for me. Even though doctors are scientific experts on this system that I live in, I also want a doctor to see me as a consultable authority on myself. I want that awareness to be included in our conversation.

And I want some humility from doctors... an awareness of the limitation of their own knowledge. Like, instead of saying "There is no cure for X," try "We have not found a cure for X". Just that subtle distinction acknowledges that western medicine is not the only healing resource there is, and avoids imparting a sense of doom. Even saying, “If you don’t do what I say, you will only get worse,” is claiming too much prescience. If a doctor can rephrase that with, "In the patients I have seen" or "based on my experience", they succeed in relaying the information without intoning a prediction of somebody's future. Because that is not anyone's right. Words have a lot of power, and we can deeply, quickly and unconsciously internalize them when they're spoken by someone we respect as an expert.

I am not suggesting a doctor withholds information. Statistics are incredibly valuable in decision-making. But they are not a prediction of an individual's reality. Saying to someone "You have a 70% chance of dying from X" is lying. Percentages exist in a broad group of individuals. They don't play themselves out inside a single human body. What would be true to say is "70% of people with this condition have died from it." Which leaves 30% of individuals who 100% did not die from it. Which leaves a person with a much more real hope and life-will. Both of which are needed in a difficult moment.

There is a part of me that wants to explain all of this to every doctor that I meet with nuanced, respectful patience. But behind that patience is something like a dragon that lives in and remains fiercely awake to the wordless vastness beyond numbers, and growls “Tell me one more time how I am not a miracle, and I will sink my teeth into your face.”

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I mentioned earlier that I had a brain tumor when I was 21. It was deep and in a difficult location to operate on. I was having seizures and a bunch of other unpleasant symptoms that I won't talk about if you ask me, because it is viscerally unpleasant to remember. Not only did doctors not believe me when I told them that I had it for a year, but they also told me once they found it that things would definitely "just get worse" if I didn't have medical intervention. But I didn't choose to do that. Instead of having immediate surgery, I found a neurosurgeon who would support me in taking some time. He was the head of neurosurgery at Cornell University in New York, and he gave me MRIs every three months over two years, which showed the tumor growing, slowing in it’s growth, stopping growing, and then getting smaller and smaller until it healed. I didn't undergo surgery or chemo or radiation. Someday I will talk more about that experience of getting well. Right now, all that I'll say is that it happened. Which does not mean I controlled it, or that I knew what the outcome would be. I didn’t. But I participated. And I drew upon things that were not accounted for when a guy in a white coat told me that if I didn't have surgery, I would "just get worse."

I understand the human compulsion to measure and quantify things. And I recognize the lack of ease people have around acknowledging things that are real but not explainable. In an attempt to categorize my experience of healing from the brain tumor, the few people that I've told about it have projected various things onto that experience, from saying that I “prayed the tumor away” or “willed it away” or “thought myself well” to “it must have never really been there in the first place”. But none of those things are it. The tumor was there, and it went away, and I got to participate. I learned things during that time that changed the rest of my life. I learned about asking, listening and trusting, and about joy as a compass and the inevitability of overwhelming gratitude for life when I am paying attention, which feels like healing, regardless of how the body goes. I learned about giving over, and being willing to experience something that I couldn't intellectually understand, and would never be able to explain. I agreed to the loneliness of that. I learned about the discipline it took to take my own healing as a subject, and to give it time, energy and attention that might have gone to other subjects in my early 20s. I learned about the truth available in dreams, stories, and waking experiences. I learned about trusting my life. And I learned about the opposite of lonliness; a kind of always with-ness that is a disembodied love in abundance everywhere, which I only occasionally find my way to feel. 

Right now, I’d be glad to have back my relationship to some of those things. Right now, as I was saying to begin with, all of that feels far away. And I know that I need it to get through this time, no matter what I decide to do. For all the importance I've been giving to this relationship with trusting oneself, I don't even feel like I can find me right now. I wish I didn't feel disconnected, lost, angry, unsure about what to do, and far from home. But I do. 

So, all this is just to say that I don’t have a decision, I am a muddle of hard feelings, am processing a bunch of anger, am coughing so much that I can't sleep, and distracting myself by watching lots of Donald Trump videos. Probably because his popularity is alarming enough to distract me from my own mental tangle for periods of time.

The other night though, after being lost for hours to some ridiculous marathon of watching him blab like an over-confident child, I found myself all at once sitting in a different part of the room, away from my computer and on the corner of my bed, my hand smoothing my hair across my forehead like a mother. And I heard my voice say out loud to me, “Oh I see. You are scared. No wonder you are trying to hide. No wonder.” And even as I write this, I am beginning to consider that maybe, being with myself and aware of my feelings, involves joining myself right where I am, instead of expecting some profound and resonant clarity. Maybe I join myself in this fear, this confusion, this anger, and I am with myself.