Chaos and Control
The other day I saw a woman scream. She crossed the sidewalk perpendicular to me some 50 yards away and, without breaking stride, threw her head back, opened her mouth, and screamed. It was neither a short nor a long scream, just long and primal enough to be cathartic but controlled enough to rule out an imminent threat. Then she continued walking and disappeared from my view. A man peered out from the house on the corner and looked around cautiously, holding his dog by the collar. I was the only other person on the block so I shrugged at him to communicate that I was not the screamer, and continued on my way.
It was after my third round of chemotherapy that I got cocky. I had moved into my own place in Truckee and done my first outpatient-style treatment, which meant I didn’t have to spend the five days in the hospital. Instead, I spent a few hours in the clinic on Monday and Friday for infusions, then carried around a fanny pack all week that dripped chemo into my chest port 24/7. Each day I took my potion pack to the clinic for a refill, and then I went home. (I am convinced that the only reason my Seattle hospital doesn’t do this is to make more money - to the tune of an extra $20K from insurance). I cooked my own meals, worked from the clinic or from home, went on bike rides, and saw friends. The potion pack was annoying (like in middle school carrying around an egg for a week to prepare for parenthood, which by the way did anyone’s school actually do because that seems very premature??), but it was a massive improvement over being in the hospital.
The days after I finished my third treatment, I barely felt any side effects. The fatigue, nausea and heaviness were shadows of what they had been after the first two treatments - and everyone had told me that side effects would worsen each time! I kept waiting for the other shoe to drop, but it didn’t. Around that time I had finished reading a book called Anticancer, which is filled with research on how our environment and lifestyle choices profoundly affect our bodies’ abilities to prevent and fight disease. I wrote,
“As I’ve viscerally experienced the effects of space, sleep, attitude, breath, autonomy, food and connection on the state of my mind and body, I’ve been reading the research that explains why. Our bodies are living soils that respond to nurture and to neglect, and both our actions and our environment can help or harm their ability to heal. I had no idea how much intentional nutrition, exercise, meditation, social connection and stress reduction improve survival rates and prevent relapses in cancer patients (in addition to all sorts of other diseases), even when traditional chemo or radiation regimens have failed. It’s both painfully obvious and completely groundbreaking.”
I meditated every morning, drank three cups of green tea a day, and all but cut processed sugar out of my diet. I was convinced that staying in the hospital in Seattle had worsened my side effects, that the stress of being at home in limbo had done the same. That my autonomy and habits in Truckee were staving off the worst effects of chemotherapy. That I was somehow in control.
And then I got absolutely whooped by the fourth and fifth treatments (when my dosage, which the doctors had been steadily increasing by 20% each time, finally reached maximum toxicity for my body) and I thought, “oohh that’s right, control is an illusion.” Searing tongue and throat sores, chronically painful fingernails and toenails, recurring infections, unbelievable fatigue, stomach pain, and three remaining eyelashes were evidence of that.
Obviously, our actions and environment do profoundly affect our health. The science on the impacts of stress, diet, exercise and mindfulness is strong, and good habits in these spaces are beneficial. I was just naive to think that they would somehow spare me from the side effects of chemo. But beyond that, I also believe there is much that is unknowable about the body. That we can do everything right and still get fucked. We can also do everything wrong and get away with it. My sister’s grandpa Frank smoked cigars and ate TV dinners on the couch every night of his life and lived to be 98 with a clear mind and functioning body. My mom ate healthfully and exercised everyday and got dealt dementia and ALS at 67. Of course, genes play a role, but it’s more complicated than that. There’s so much we don’t know, and it's difficult to strike the right balance between holding on and letting go.
Suleika Jaouad wrote a book called Between Two Kingdoms, which details her four-year battle with leukemia at age 22. It’s a beautiful book, and I read it while I was in the hospital. This year marked her ten years in remission. Last week, I opened her newsletter and found out that her leukemia had come back, and that she was beginning chemotherapy again. I felt devastated.
Suleika talks about living on fault lines. She says, “after the ceiling caves in on you, you never assume structural stability—you learn to live on fault lines. The act of imagining a future life, especially one of your dreams, can feel daring, even dangerous—because it requires hope.”
The pandemic reminded us all of these fault lines. When I landed back in Seattle after a shortened stint in the Peace Corps, unfathomable uncertainty manifested for me in a visceral and irrational fear of earthquakes. Specifically, fear of The Big One that was overdue to hit Seattle, that could precipitate a massive and devastating tsunami. Since I lived alone on a houseboat, the tsunami was of particular concern. For a couple of weeks I lived on edge, expecting the earth to quake at any moment, to swallow me up in a rocky abyss or to crush me in a fist of water. I had never experienced anxiety remotely like that before. Sometimes it was so unbearable that I would trek to higher ground and lie in a hilltop freeway park, hands gripping the moist dirt, willing it not to shake. But the earthquake never came, and the fear gradually faded. I stopped quickening my pace beneath bridges or wondering if the building I was in was structurally sound. I felt sheepish for letting the fear overwhelm me, but it also made sense in a way. The world beneath me had shifted abruptly and catastrophically. Who was I to say it wouldn’t happen again?
And it would. It would, because we live perched on the precipice of chaos. There, we've constructed steel cities, mountaintop palaces, underground matrices, a whole world of walls that protect us from the outside. If we’re lucky, this world feels sturdy - the ground beneath us secure, the walls around us solid, the roof above us constant. But even for the most privileged, in the end it’s all made of glass. A chandelier swinging from a decrepit ceiling. A greenhouse in a field of landmines. As entropy gnaws at the edges of our vision, we scramble to carve out refuges of order, to build boxes where things make sense, where we are in control. This is, some could say, the very purpose of life: to create some kind of order and meaning within an orderless and meaningless world.
There is value in creating order. As we do so, I think there is even value in operating with a degree of self-deception, in assuming that we have more control over the course of our fate than we ultimately do. This gives us confidence and motivation, and it's one way to hold on to hope. But we must also know that life offers no guarantees.
In ‘Why Fish Don’t Exist’ (one of my all-time favorite books) Lulu Miller offers another prescription for hope in the face of Chaos. Her's is simply, “the promise that there are good things in store. Not because I deserve them. Not because I worked for them. But because they are as much a part of chaos as destruction and loss. Life, the flipside of death. Growth, of rot.” Luck and chaos are really just two sides of the same coin. The fault lines that shift beneath us may wreak havoc. But they may also crack the world open, allowing us to see a slice of the universe we were previously blind to.
“The best way of ensuring that you don’t miss them, these gifts, the trick that has helped me squint at the bleakness and see them more clearly, is to admit, with every breath, that you have no idea what you are looking at. To examine each object in the avalanche of Chaos with curiosity, with doubt.” In other words, to leverage the power of our minds while admitting their limitations. To consider that we cannot know how anything fits into the larger fabric of our lives, and to rest in that uncertainty. But not to rest helplessly - rather, to scour each pile of rubble for new building blocks with which to construct our dreams. Suleika finishes her thought on fault lines with, “[even while living in uncertainty]… there’s power in articulating our dreams, in speaking them into existence.”
I think so too. Because while we can't choose what befalls us, we can choose, to a degree, how we receive these events and what to do from there. But I'm learning that this choice doesn't have to be (and can't always be) grand or brave or awash in positivity. Sometimes, it's simply to hunker down and weather the storm, and that's OK.
I don’t know what my future will hold. I don’t know if my cancer will recur, if I will be left infertile, if I will develop a different cancer as a side effect of the chemotherapy, if I will ever feel quite the same. And that’s scary. But what I do know is that there’s no use in waiting for earthquakes, and I don't have time to keep walking to freeway parks. And I may as well meditate and drink a boatload of green tea, but I'll be damned if I don't also eat carrot cake and drink a beer.
So in the face of it all, maybe all we do is scream, and then keep walking. Keep walking and dreaming, because there are good things in store. Because there have to be.