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The First ‘A’: On Loneliness as a 16-Year-Old Survivor

by Alexander LaMonicaSurvivor, Hodgkin's LymphomaApril 5, 2023View more posts from Alexander LaMonica

The First ‘A’: On Loneliness as a 16-Year-Old Survivor

It was 7:31 PM on a Wednesday and as I stared into the wall that night, the last thing I wanted to feel was sorry for myself. Against every word the doctor spoke to me that dripped with his implicit condolences, my mom crying on the window sill beside my bed. With a quick post to Instagram I was showered with attention, likes, and words of encouragement—everything I needed to get me through… or so I thought. And so I jokingly complained about the bland hospital pasta and the IV in my arm to my concerned classmates. I told my friends over text it was “just cancer” with a smile on my face. As if to insist I wasn’t afraid. As if fear is an admission of defeat more than anything else.

I began chemo a month after my diagnosis and in a sense, I was never alone. I was connected to more people than ever. I received countless cards, gifts, offers to help—anything you can imagine. It’s easy to appreciate these things when Hodgkin Lymphoma is only a term printed on a pathology report. I felt more excited than anything else. I enjoyed my visits to the hospital, conversations with doctors, and talking with friends about my condition. I wanted to be a fighter.

The idea of cancer as a “fight” or “battle” has permeated our conception of the disease. To assume a combative nature is to claim a degree of control. When I was a freshman in high school, my grandpa died from cancer. For one week, I had gone to his bed each day and convinced myself it wasn’t over yet, that even in his frail body and the fragile hum of his voice, there was still hope. Easier to reconcile the man who used to pick you up from school every week to a determined survivor than to a senseless victim. Easier to say keep fighting. And as I watched him struggle for his last breaths, some part of me could only think he just didn’t fight hard enough. Now, two years later, I wanted to be different—I wanted to fight hard enough.

As such, in my time as a patient, I worked hard to preserve a sense of normalcy. Between 12-hour visits to the hospital every week, I was determined not to surrender an inch of ground where I could help it. I went to school every single day I could physically manage. I put a hat on to cover the bare skin where hair should be. I pushed through profound pain and exhaustion just to make it out of bed. And against all odds, despite missing over a fifth of my classes, I excelled at my schoolwork and received a perfect academic record. But I soon realized that if I was not the sickly, emaciated child from every Saint Jude commercial, then to everyone else, I was just, well, normal. Worse than being the kid with cancer is being the kid who just wears a hat every day.

Maybe then, our loneliness hides in our perceived normalcy. No one will ever know what I felt showing up to school each day; they will only know that I looked “good enough.” But in the way that drowning is undetectable to an untrained observer, the worst pain doesn’t leave you screaming but drowns you in silence. Lying helplessly on your bed after school as you reach for the faint traces of words and ideas that you once called yourself. You don’t have to look scared to be alone.

How many hours have you lost to a particular spot on the wall, staring into the void as you try to drown out the pain? How many times have you been too tired to feel any emotion at all? Sitting and waiting in steroidal delirium for the next thing to happen, you have since forgotten what it was, desperately reminding yourself that only time heals all things. Is there any palatable way to communicate this, experience to be gained, or lesson to be learned? Is this really what fighting looks like? Cancer then, at its worst, is not a fight but a waste of time. I think this, above all, makes cancer so isolating. I can describe in vivid detail the searing pain of mucositis, or the nausea I feel when I smell hospital soap. These are communicable concepts that elicit an intense emotional response. But how then do I say that the worst pain of all hides behind a simple “I’m just tired?” A phrase I’ve uttered countless times to classmates asking how I’m doing. These words are all I’m offered to express a dull reality.

As a 16-year-old, from a medical perspective, I am at an incredibly awkward, liminal phase between pediatric and adult medicine. Because of this, we teens are often forgotten. I am either the oldest or the youngest in any given waiting room, something that’s reflected in the quality of psychosocial support provided. Resources for teens with cancer are few and far between. To this day, I have never met a single survivor my age. In the absence of language, empathetic connection is vital to feeling understood, but that’s something I’ve hardly been afforded. I spent hours scouring the internet for any trace of connection to anyone my age, but every resource I was referred to seemed to forget the first ‘A’ in AYA. Because of this, I was left to manage myself alone. I still believe strongly that teenagers are one of the most underserved age groups in this regard, and I’m willing to do whatever it takes to advocate for others my age. Our current support networks need to do more to reach out and proactively facilitate these types of connections so that no child is left behind. So that every teen has the opportunity to bring meaning to the time that cancer hopes to rob from us.

Today, as my hair slowly begins to transform into its first semblance of a passable haircut, and my scars begin to heal, the loneliness cancer brought me still burns within. I still claw on to any study, any program offered that gives me another excuse to return back to the hospital, so as to cling on to my experiences, to bring meaning to the senseless, in a world where the very concept cannot be related to those around me.

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