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.