I took an Intro to Buddhism class in the spring of my sophomore year of college. Having grown up with enough Catholic education to navigate my way around symbols of saints and the metaphors of resurrection, I decided to immerse myself in a world totally new to me. For the sake of complete disclosure and honest journalism, some of my best friends were also taking it, and it filled a pretty sweet spot in my Tuesday/Thursday schedule along with dance class and dinner. The professor was an adjunct from the city and would cancel classes when his kid got sick – which we noticed always seemed to be on the sunniest, most beautiful days. He would teach while sitting in a chair, told a lot of stories, and seemed to genuinely care what we thought. We did a lot of laughing and listening, and because of this, I remember a good bit of what we were taught.
The concepts of impermanence and suffering are at the core of Buddhism. I suppose they are in many other religious, ashes to ashes and all that, but the Buddhists hold this as their central tenant and arguably discuss it more than anyone else. The Buddha taught that we are trapped in this thing called samsara, an endless cycle of birth, suffering, death, and rebirth, broken only by reaching nirvana and obtaining enlightenment. (This led us to joke as our laptops acted up that they were attempting to escape samsara.)
Consequently, the Buddhists have a lot of labels around suffering. There are many different types, but my favorite is hands down the Suffering of a Fine Meal. A delicious dinner, the Buddhists would argue, is a form of suffering – because it’s in our human nature to miss what we had. We don’t just think, “wow, what a great meal!” but, “wow, what a great meal! Man, that was just SO good. I wish my portion were larger. I wouldn’t have been able to finish it, but taking some of this home would have been great. Think we can come back here again?” Way back before foodie culture, the Buddhists knew we’d be taking photos of our food to proudly post on Instragram.
I’m learning a lot about impermanence these days. The infusion cycle is different for everyone, and while there are general patterns, nothing can be certain. Here’s the general pattern: on infusion day, you get steroids in addition to your prescribed poison, and you feel kind of great. They hang out in my system for a few days, giving you a little boost of fake energy. During these days, I try to make the most of it and do some cleaning, socializing, and gym going. I see a previously unprecedented number of Broadway musicals. I feel guilty for being out of work and miss my students. During that time, I often think that this chemo thing really isn’t so bad and maybe I can be like those people on 60 Minutes who train for marathons during treatment. Lather, rinse, repeat. It’s a heavenly meal.
About a week later, I’m brutally humbled as the wall of fatigue hits. As though little weights are attached to all of my limbs, it is a struggle to put my feet on the floor next to bed or ignore the siren song of the couch and Netflix. In the coming days, I’ll also possibly enjoy a metal taste in my mouth, painful mouth sores, peeling and burning hands, itchiness, a rash, and increased tumor pain. Before I know it, my thoughts have become patterned in the opposite way. I think that I will never have energy again and wonder if I will ever get to do anything I love, like travel or dance or wake up to watch the sunrise, ever again. Ah, that meal, remember how delicious it was?
Sound dramatic? Fair enough, but I think it’s universal and part of this human nature business of not believing in impermanence. A comedian named Jim Jefferies accidentally gave him and his son food poisoning. In the throws of his son’s illness, he described the pattern of thinking as, “well, this is me now. This is how things are from now on.” I would venture to guess that most of us have had that very thought in a similar situation, whether four or forty four. Think back to the last time you had a stomach virus. Not a quick one and done job, but a real rocking, bring the blanket in and sleep on the bathmat trip. Hard to believe it would pass then, right? (And if you have gracefully edged around this with a level head and a wisdom beyond your years, and you think I am just catastrophizing, remember that not too long ago, I bounced from doctor to doctor and was told I was making a big deal out of nothing, only to be told it’s a sarcoma… So bear with me; I’m fighting my own experience here.)
Eventually though, that “this is my life now” feeling does pass. I’ll start to feel almost normal. A few days before my next infusion, the combination of renewed energy or anxious anticipation will lead me to do insane things, like re-pot houseplants at midnight. (So, not quite normal, but you get the picture.) It’s absolutely bittersweet because I want to enjoy the normalcy, but I know the next part of the story. I know I’ll feel terrible again soon. It’s really stinking hard to be present, and live in the moment, to live, laugh, and love, or whatever the other wall art in Homegoods is preaching these days.
“Do I contradict myself? Very well, then I contradict myself, I am large, I contain multitudes.” — Walt Whitman
In trying to create a context for my experience, this “chemo samsara” really helps me understand myself. It is why I feel some days that I have been called to be an advocate for patients with a rare diagnosis, but others, I don’t want to talk about how I’m feeling. It’s why I am itching to write a blog post on some days, and others I opt to numb out with another season of Parks and Rec. It’s the reason why I wear a “Straight Outta Chemo” shirt at the gym and also why I can’t motivate myself to go. It’s why, despite years of saying I fell out of love with New York, I take the train in so I can be just another face in the crowd.
It’s why many days I want people to text me and so I don’t feel forgotten, and other days, I want to be forgotten completely. It’s why silence is scary and why, despite having practiced and taught both yoga and meditation, I drown myself in podcasts to listen to anything other than the sound of my own thoughts echoing in my head. It’s why, on the days where I feel like complete crap, I hate being called brave, even though it is a huge compliment and a perfectly wonderful thing to say to someone. But I don’t want to be brave. I would rather be a coward and have my old life back. Like a child screaming from the back of my throat, “please, I’ll be good, I promise!” I am clawing at the leg of something bigger than me, begging for that thing I just had in my hands moments before.
This round of chemo, while in many ways made more tolerable by being out on disability from work, is infinitely harder because I don’t have work to distract me. I’m living in a house of mirrors, where every moment is a stern invitation to look at myself. In all this physical mess, I’m also being challenged to answer that great, question of, “who am I?” Like a second adolescence, it’s changing every single day, perhaps exactly as it was before, only now I have nothing to distract me from this business of discovering who I am.
I’m still figuring it out, but here’s what I’ve got so far: contradictory multitudes. I am complex and straightforward, defeated and resilient. I am hopeful and discouraged, angry and I am grateful. I am healthy and sick, grief and laughter. I am no longer and I am in spite of. And on the days when nothing else makes sense, I take a page from the poet’s book.
“I took a deep breath and listened to the old brag of my heart. I am, I am, I am.” — Sylvia Plath