re·mis·sion: a diminution of the seriousness or intensity of disease or pain; a temporary recovery.
This word, remission, is highly associated with cancer patients. They get to ring a gong and celebrate the absence of their sickness. And after weeks, even months, of being tethered to chemo, hospital beds, and treatment schedules, they are thrust back into the world.
Believe it or not, that is petrifying. When all you know for so long is just wait, wait, wait; wait to see if you’ll make it out on the other side. What do you do once you actually reach that other side?
It’s a question I find myself trying to answer. Topical Steroid Withdrawal may not be cancer, but she certainly takes the wind from your sails.
But now, while relying on an injection every two weeks to keep my skin clear, I can not help but wonder about my own remission. No where in the definition does it say “cured”, and it certainly doesn’t promise ‘happily ever after’.
Before I even started Dupixent, when my body had a small taste of what healing looked like, it felt daunting. I would daydream about being well and what life would look like. However, when I started to feel better, I had no idea what to do. My life had changed so drastically that it was hard to acclimate back into a world that had been revolving without me.
During the summer of 2021, I read a memoir by a writer and cancer survivor named Suleika. It tore me open. I never thought my journey could be so well reflected through the eyes of a cancer patient. I felt everything she felt, lost “between two kingdoms.”
Here is a beautiful talk she gave a few years ago on this very concept.
Suleika’s Ted Talk: What almost dying taught me about living
Her words stirred something inside of me that had been dormant for decades. From a young age, I’ve loved being curious and creative. I hyper-focused on one form of art, dance always taking to the spotlight. I loved it, I was good enough to land professional work doing it, and it certainly gave me a life I truly loved living. But tucked away, hidden in the cracks, was my need to express myself in other ways. I’d allowed my body to pay the bills, but it was the stories inside of me that I was too afraid to bring to the light.
Since the age of fifteen, I’ve written a countless number of stories, plays, and screenplays. It wasn’t until I became ill that I allowed myself to openly share some written words with the world. Well, not totally true. I wrote a book at sixteen, but it is awful, something I wish could be erased from existence.
Yet that desire to write, to create, has never left me. I just never allowed myself to explore that part as a realistic piece of value in my life.
“I understand now why so many writers and artists, while in the thick of illness, became memoirists. It provided a sense of control, a way to reshape your circumstances on your own terms, in your own words.”
That same summer that I read Suleika’s story, I realized how much I wanted to write my own. I was suffering through a flare and about to have a third hip surgery. I didn’t understand my purpose any longer, but one thing became suffocatingly clear. I had to leave. I had to write.
“My time in India has given me a glimpse into how travel can hurtle you out of the old ways of being and create conditions for new ones to emerge.”
It’s really true. Much like an etch-a-sketch, I shook my dormant dreams out of the depression they were in and found myself in places that brought me back to life. What many do not realize though is, during that time, I was writing my own memoir. I wrote in cafes, on my rented couches, and in a stranger’s bed, shedding the lining of every painful memory and blissful revelation that creating my first documentary had given me. I wrote one to two thousands words a day. It was heaven. I didn’t know exactly where my life was heading (just coddiwompling), but I knew it was somehow worth the confusion and blind will of following my heart and gut. Society has engrained in me to be responsible, to set risk aside, but this summer taught me the most valuable lesson of all: that life is short.
And during this summer, Suleika was informed that her cancer has come back. She is no longer in remission, but once again fighting for her life.
I guess that is what I’m doing, too, just in a more preemptive state.
Once I got back home this summer, caving into taking Dupixent and realizing what the word remission truly means, I couldn’t find the space to edit my memoir — because my story isn’t over. As my skin cleared in a way it never had before, so had my blanket of comfort. I know my days are numbered on this drug. It can stop working at any moment and my remission will be over. I have no idea how my body will react. So, right now, no matter the madness it may paint to others, I am going to make this life count. At any cost. At any cost.
“Facing my mortality had stripped away any concerns about being cool, and it did not feel embarrassing or too earnest to say that I hoped to make a difference. I wanted, in my own way, however small, to contribute something to the world. To leave more than I took.”
That’s why this second documentary means so much to me. It is the umbilical chord to the marrow I wish to leave behind. And once it’s finished, maybe then I can finish my own story. Maybe then I’ll have the right ending on the page.
But for now, my heart is rooted in the garden of this film. Come rain or shine, it will find a way to the surface. I want to play big and get my hands dirty. I want to sew our suffering into a blossoming center of solace for those not yet born. It is unbelievably scary, and there are moments where I second guess the hell out of myself, but — life is short. Fear makes it even shorter, and there is no time for dwelling on the dark “what ifs”. There is only space for the magic.