“…you were sent to me because I’m sick.” (Jamie Sullivan to Landon Carter in A Walk to Remember)
“… you make me into someone I couldn’t even imagine. You make me happy, even when you’re awful. I would rather be with you—even the you that you seem to think is diminished—than with anyone else in the world.” (Louisa Clark to Will Traynor in Me Before You)
“Some infinities are bigger than other infinities. A writer we used to like taught us that…I want more numbers than I’m likely to get, and God, I want more numbers for Augustus Waters than he got. But Gus, my love, I cannot tell you how thankful I am for our little infinity. I wouldn’t trade it for the world. You gave me a forever within the numbered days, and I’m grateful.” (Hazel Grace Lancaster’s eulogy for Augustus Waters in The Fault in Our Stars”)
A host of other such sentiments exist in the myriad of romance novels and movies about love and illness—Dying Young, A Little Bit of Heaven, Sweet November, Keith, Now Is Good, and The Big Sick, to name a few. But illness isn’t romantic. And language that frames it as such is problematic, inaccurate and dismissive. Still, over the past eight years, I’ve come to understand the impulse to place illness within that dreamy, hopeful, meek yet all-powerful narrative. I have had to take the name of each diagnosis I have acquired and learn to understand it in a new way. A word which I once knew in the abstract as just another word in the dictionary, and perhaps an indicator of a particular level of vocabulary, I have had to come to understand as part of my narrative. And each time I have faced this task, I have feared what I might never experience in love—and that what I have experienced will make mortality both easier and much harder to come to terms with.
The intertwined complexities of illness and love are, in part, why I struggle to make peace with the seven chronic diagnoses that I received before even reaching my mid-thirties. In fact, at one point, I struggled to conceptualize my body as anything other than an enemy; a sadistic entity; and yet also as an object that functions innately, regardless of my efforts to change its properties. My therapist at the time suggested that I try to empathize with my body rather than feel as though I have to fight against it; she encouraged me to imagine that my body wants to be healthy, wants to function “normally,” and that, if there is such a thing as a fight, me and my body are in it together.
With her advice, then, I have made great efforts to re-conceptualize the vignettes of my life—therapy, research, reading others’ narratives, and composing daydreams that align with “What if everything turns out okay?” rather than with “What if I die? What if I lose the quality of my life? What if I miss out on the realization of the dreams my fiance and I have for a life together? Sometimes, if I can bring myself to do so, I even pray. I write and rewrite what I can of my existence, a small chapter in a much larger, meaningful composition.
Similarly addressing this notion of a relationship among language, illness, and realities, Meredith Gray once said:
“Battle. Fight. Win. Lose. These are the words we use when someone is diagnosed with an illness or a disease. We use militarized language that implies it’s a fair fight. But when it comes to life and death, what does winning really look like? Is a person a loser for dying when the outcome isn’t really in their control? When it comes to medicine, who’s to say what is winning or losing? There’s just as much value in trying again as there is in letting go. Letting go of suffering, regret, pain, fear. Instead of saying someone we love is battling, beating, fighting, winning or losing, why don’t we just tell the truth? We get sick. We take our medicine. Some of us live, some die.”[1]
So, as I write this, waiting for yet another test result to determine if I need another biopsy, I remember the words of my former therapist and I try to empathize with my body. With the truth in Meredith’s words, I try to separate illness from love and war—despite Hollywood’s attempts to marry them. Though illness seems to both create and destroy any sense of meaning, I follow the advice we often give to young children overcome with emotion and uncertainty: I use my words—the ones I hear, read, and embody; the ones that poke and prod at my psyche and the ones that seem to just cut my soul right open; the ones I struggle to understand in new ways; the ones I embrace; and the ones that, despite any psychological advice or failed defense mechanism, I rage against. And on a bus ride home, I notice the title of the big brown Bible on the dashboard of a passing blue Chevy pickup, and the iridescent “Believe” sticker on the window of a black SUV. I find joy and amusement in the countdown to my wedding ceremony that weddingwire.com keeps, even down to the seconds. I find gratefulness and victory in my student’s description of my classroom as “a sanctuary,” despite the unseen turmoil with which I sometimes entered it. And with those texts, I write and revise—at each moment that life—and death—call for me to do so. Because the words with which I choose to craft my life story, the words I choose to speak to myself, and the words I choose to share with others matter a great deal in how I experience the truths of my life.
[1] Finch, Elisabeth R. Grey’s Anatomy. Season 15, episode 11.