De-Lei’d

I was supposed to be on a plane to sunny Hawai‘i in a few days. The past week should have been spent packing beachware and scrutinizing between SPF 30 or 15. Instead, the past week was rather miserable. I was haunted by waves of cold chills that rushed up and down my body, more severely at night when I’d be trying to sleep. My head pounded. The constant, stagnant nausea became so unbearable that I couldn’t stomach even my ‘all-time low’ staples like toast and cereal. I lost weight rapidly. My energy plunged to what felt like non-existent; between that and the queasiness I could barely muster the strength to walk around the apartment. Most frustrating was the fact that while my body showed very visible signs of stress and illness, I never once developed the most clear sign of an infection: fever. Maybe this shouldn’t be frustrating; it could have been a lot worse had I developed a fever. But the absence of any hard evidence of illness made it very unclear what exactly the matter was. My friends and family were eager to have me visit the doctor. I was less enthusiastic. I’ve been through this process many times before. I’ve taken all the tests, I’ve answered all the questions, usually from about three different doctors. It’s a royal pain to endure six or seven hours of this when you’re already feeling crummy, and the frustration compounds when, at the end, the doctors conclude that they have no idea what it is and no idea what to do, other than let it play out and see if it becomes something worse.

It’s all happened before. What changed this time is that, for the first time in a while, I had gone ahead and made some sort of a forward plan with my life. I know better than to do this. I know that plans get thrown out the window with chemotherapy. You always need to prepare fall-back options. But frustrated with the inability to make any sort of concrete plans in my life, I made one anyway. I made the decision to travel to the Big Island of Hawai‘i about six weeks ago, to look into a possible long-term stay at a holistic center that a friend recommended as a good place for healing. I knew just as surely as my doctors did that, despite the fact that they hadn’t come to any conclusions about my strange condition, Hawai‘i was a no-go for now. I called and explained the situation to the wellness retreat and rebooked my ticket for a month from now.

I was visited by a healer yesterday, a friend of my mom’s, who offered to spend some time clearing the energy in my body. Her eyes sparkled, she told me she was from Peru and had grown up learning to talk with the mountains. As I lay in repose and she moved her hands over my arms and chest, her hands slowed and hovered over my heart. She stayed there for a while, resting her warm hands on my chest. After a while, she sighed, almost in confusion at my body’s response. “You know,” she hummed, “it is okay to open your heart again.” Disease brings retreat. Disappointment brings retreat. There is a sisyphisian element to cancer that is hardest to come to terms with: the constant defeat, the impassable destruction. When you think you’re up, you’re down. When you think you’re ahead, you’re behind. For every two steps forward, you fall back a few miles. I’m hard on myself in the midst of the fall for not having the strength to grip onto something and pull myself back to where I was before. Instead, I fall and fall. A few times I’ve managed to fall gracefully, with understanding and acceptance. But most of the time it’s pretty miserable, and when I come to again, the road ahead of me feels even steeper and longer than it was before. So I close off, partly as a way to let a bruised body heal. Her words reminded me of the duality of healing though, the need to close off and retreat after the fall, but also the need to open once again to possibility—including the possibility of destruction! It is a difficult, even painful process to endure. Samuel Beckett, of Godot fame, seemed keen on this process. “Ever tried,” he wrote. “Ever failed. No matter. Try Again. Fail again. Fail better.” I’m getting really good at this.

Accept Change?

Five years ago, I was sh*t out of luck. It was May, and while most college students had already picked out classes for the fall semester, I was frantically trying to figure out what to do with the next year of my life. I couldn’t return to NYU. I had applied as a transfer student at several schools, but none of them saw my acting experience (vocal gyration 101) as transferable academic credit. The rejection came fairly late in the year for other decisions to be made about school, and so I felt somewhat stuck. My advisors told me to wait a year and apply to several competitive scholarships at NYU that could help me finish my last two years. In the meantime, though, it felt as if I’d be looking down the face of a year spent in the bleachers. All directions felt like defeat: to stay in New York and watch my friends and peers progress a year further in school held little interest.

In a last attempt to free my mental block, my friend Frankie took me to the roof of our apartment for a cigarette break. Staring out at the moonlit Manhattan skyline, Frankie asked me to try something I hadn’t before. Rather than moving forward, which seemed impossible at the time, try moving sideways. His invitation seemed cryptic, and unclear. How could this year be any different than I had wanted it to be? Frustrated, he retorted. “What would you do, if you could do anything right now? Anything??” He climbed back down the fire escape to our apartment and left me to muse with the moon. Anything. The thought came quickly, a momentary burst of clarity. Four months later, my plane landed in Nairobi, Kenya, the start of a life-changing detour to a small village out on the coast.

I’m stuck. I know I have ambition, but it feels replaced by nausea. I have passion, but it feels stifled by exhaustion and limitation. Every corner I turn, I feel met with resistance. Resistance is good; too much is overwhelming. I am a changed person, and that can be tough to acknowledge at times. So I continue to place myself on the same track as those around me. Inevitably, though, I fall behind. How can I keep up right now? I simply don’t have the strength to do it. So I lay on my couch, feeling somewhat defeated and left behind, unable to see the ever-expansive forest for the trees. I wallow in regret, and have a difficult time imagining how the next three years could be any different than what I had originally hoped for.

My uncle recently wrote something in a letter to me, a response to an earlier post. “There is a risk in wanting things to be ‘normal’ that you will return to the unknown causes of the cancer--don't go back, instead go into the change as best you can understand what it is.” Funny part is, I don’t understand the change, but I can sense that I must go into it regardless of knowing it well.

I am looking sideways. I am musing with the moon and contemplating how it could all be profoundly different than first imagined. I am digging for memories of past adventures, waiting anxiously for a somewhat similar spark of ingenuity. And I am sitting with change—messy, uncomfortable—hoping that sometime very soon, we will know each other better.