How I Reacted To My Terminal Diagnosis As A Teenager

     I was an explorer, running through the ancient city at a strong pace, when I stumbled upon an obstacle in my path causing me to be captured by the monkeys that were chasing me. I was just short of beating the all time best amongst my friend group in the game Temple Run, because after nearly four weeks in the hospital I had become a pro. It was a knock at the door which threw off my concentration. Although this was pretty standard, considering the fact that medical staff walked in and out of my hospital room all day, there was something different about this knock. It was "the knock" everyone with a story like mine talks about. Whether it be a knock, a phone call, or the ring of a door bell, it marks a pivotal moment in which everything that person knew to be good, safe and true has been altered. For me that knock at my hospital door meant a terminal diagnosis at the age of fifteen. In the many moments since my diagnosis, I have learned we seem to throw the big picture out the window when our brains have been given this kind of life changing news. I didn't have the capacity to think or focus on the future of my life, so instead my brain blurted out the first thing I had the ability to think of.
     So what did I say? The first words to come from my mouth are not ones most people would expect. I said, "I'm sorry, Mommy." I am sure the question going through most of your heads is, "Why would she feel the need to respond with that?" And it is a fair question to ask. To be honest, I was never able to understand why I responded with what I did until I saw it in the movie, Five Feet Apart. In case you've never heard of the movie before, it is about two young adults, Stella and Will, both diagnosed with Cystic Fibrosis who fell in love while receiving treatment in the hospital. However, due to their diagnosis they must keep their physical distance from each other because they could make each other sick. In a specific scene of the movie, Will and his mother learn from a doctor that the clinical trial drug has failed to improve his overall health. We watch as Will, a seventeen year old boy pretends like the news did not hurt him that bad and like myself, we saw him crumble as he apologized to his mom for failed treatment, for his disease, and for being a burden. Will truly believed he had control over the final outcome, that he not only failed himself, but also his mother and his entire medical team. It was this scene that paralyzed me, because I knew in that moment exactly how his character felt.

     I, too, said I am sorry- not out of fault, but rather out of the deep pain I believed I was projecting onto others because I failed to recover. Although no one can place blame on me for my diagnosis, I knew the only reason everyone was suffering was because of myself, the financial stress, the separation of our family while I was in the hospital, the emotional devastation of such a diagnosis, and our entire life was forever altered in a matter of minutes. I felt like they needed to know how hard I pushed my body to try to function normally, but the disease was taking over. I could not win. I was losing, and for that I was very sorry, so that is the only thing I could muster up the courage to say, "I'm sorry, Mommy." When people come to me curious about how I responded to my diagnosis, I come to learn many have it all wrapped up in their heads how they believe they will respond when given news of a diagnosis. Sometimes these people even tell me I responded incorrectly to my own diagnosis, whatever that is supposed to mean... When we face a tragedy, we are thrown into this new terrifying phase of what is supposed to be our life and told to make do with it while the rest of the world expects us to have a sensible reaction to something that isn't sensible to begin with. They say somehow, in some way, I should have responded by immediately jumping into fight mode by asking what my chances are, the protocol being established for my treatment, or another beneficial question along those lines. I believe they expect this because the rest of the world is still carrying on without their life shattered at their feet. They have the luxury of rational thinking, an emotion that trauma deprives of us.
     Going back to the app, Temple Run, imagine the game as the experience of learning of and reacting to life-altering news. The game begins slow as the explorer runs through the city but as it continues the explorer's running pace becomes faster as they continue through their day to day life. For the explorer it seems like out of nowhere a couple rocks appear in their path causing them to stumble, like the unexpected diagnosis which uprooted my life. When the explorer stumbled on the rocks they might have had the breath knocked out of their lungs. Still the explorer must keep running before they had the time to process what hit them because there's a game to be played, similarly to how there's a life to be lived. What they don't realize is that we don't get to be the explorer who can take a break by pressing pause until we are ready to play the game again. We don't get a break to figure out how to respond to the news, we just react. Most believe they will respond by breaking down sobbing how they don't want to die, how this is not fair, that they will ask a hundred questions regarding the outcome of the events, or something similar focusing on the big picture. Instead our responses might be brief, we might be so numb we don't react at all, we could be speechless, unable to express appropriate emotions, or like myself, we might apologize for something that was never our fault to begin with. You are not required to be inspirational throughout all the shit you have been forced to endure.The reality is when you are struck with the weight of the news regarding your tragedy, it uproots everything we know as good, safe, and true leaving you with nothing. It is normal to feel completely lost after receiving life-altering news, so don't you ever let anyone make you feel otherwise.

September 2013: 3 weeks into hospital stay that led to my diagnosis