The Misunderstood Tragedy

I have a confession. Last week, I did something I never thought I would—I signed up for a 5K. Let me be clear: I’ve never willingly run that far in my life, and I’ve never felt the desire to. If someone had asked me to take on something like this when I was 19, feeling invincible, and my cardiovascular system hadn’t yet gone to war with doxorubicin, I probably would’ve said something like, “Hell no. Why would I do that?”

Don’t get me wrong—I’m far from confident in saying yes this time around. After chemo, I never got my energy back, and I live with much more heart damage now than I did at 19. But still, I felt like I had something to prove to myself. A few miles was a challenge I could finally choose; I needed to know that this body was still capable of carrying me through life and that it wouldn’t stop until the finish line.

I feel a divided expectation within myself: one half tells me to be patient and rest, while the other begs me to get out of bed, to do whatever it takes to catch up with my peers, and take life by the reins to show everybody that I’m more than my cancer. Despite the reassurances that I deserve rest and that it’s normal to still feel the effects of what I’ve been through, there’s a persistent drive to make the most of my time—an anxious, overly caffeinated sense of, “I’m wasting it all.” I’ve come to feel like a deer standing by the freeway, panicked from all the times I’ve watched friends die before they had the time or chance to do everything they wanted to.

This isn’t as dramatic or as profound a tragedy as some people may think; it’s simply a tragedy. The fear of losing your life brings forth more worries than just missing a Make-A-Wish trip to Disney or your getaway to the Redwoods. Most cancer patients I know would be content with an ordinary, stable life. This isn’t to say we don’t want to expedite our travel and life-living, but in order to live life, you need a life to live. Instead, we were robbed of the expectation of safety and the promise of a future, then sent on our way with these crucial components of life now missing. I often think about how to fill those gaps: I’d like to celebrate a twenty-fifth birthday.

I want enough time to waste sitting in Los Angeles traffic, enough time to grow up and get married, and then I’d like to spend the rest on the grossly unremarkable.

If there’s one thing I’ve grieved the most since my diagnosis three years ago, it’s losing the permission I felt to be able to have expectations. Living through a civil war like cancer has driven me to consider myself lucky for anything and everything I get to experience, almost like a form of Stockholm syndrome—one where I’m grateful to my captors for not taking my life yet. Even though I’m no longer held hostage as I was during that first inpatient week of chemo, where I only moved from my hospital bed a handful of times, the discouraging truth is that you can’t outrun or escape your own body. Since then, I’ve come to realize that some people will always expect a version of me that was killed off in the chemo chair; I find myself compelled to remember who that person was before all the cell death, just so I can pretend to still be her. The pressure to uphold a façade of normalcy is exhausting, and oftentimes, I feel trapped in a purgatory where I’m simultaneously digging up the person I used to be and trying to grieve her so I can finally move on. Letting go of the very safety net that holds you back is daunting, almost impossible; why give it up when you’ve already sacrificed so much?

At the time of writing this, I’m hardly identifiable as a cancer patient. Sometimes, I have the irrational worry that my loved ones have somehow just forgotten—that if it weren’t for the occasional tank top that sits just below my port, there would be nothing that sets me apart from the average person. So much rhetoric around disability has caused me to internalize the idea that I need to be seen to be believed, as if it’s my responsibility to wear a low-cut top to occasionally send out the unspoken reminder—I’m still here; I’m still hurting. During the later days of chemo, I felt immense pressure to go out in public without a wig, despite living in a college town where my baldness made me a pity exhibit. But at the same time, I thought to myself—what if I wore the wig, and these strangers didn’t understand why I was stopping to catch my breath so often? I didn’t realize it then, but society’s expectations of disability drove me to compulsively make myself visible, even at the cost of my own autonomy, just to feel like I could be forgiven. And deep down, there was a fear that, for whatever reason, I wasn’t forgivable at all.

Cognitively, I know my loved ones haven’t forgotten. Yet, the reality is that many people still unconsciously associate cancer with a certain “look,” and unlearning that expectation—even my own—can be difficult. As a child, I remember how cancer meant shiny bald heads and “I Heart Boobies” bracelets. I held a quiet assumption of headwraps, oxygen masks, and big smiling faces on pharmaceutical ads where a woman talks about how this new treatment has given her more time with her kids. She has perfect teeth, no steroid-induced moon face, and you don’t see any sores in her laugh. She reflects the more digestible parts of cancer.

Nowadays, as a 22-year-old with very few visible signs of illness, I feel like I can only be recognized as a cancer patient during my quarterly surveillance scans. Even though the fear of recurrence, the pain, and the heart issues are constant, I’ve learned to hold this inconvenience captive out of fear that I’ve already exhausted my reliance on others. This emotional isolation is familiar to many—the chronically ill, the disabled, those with mental health struggles, and cancer patients alike. Oftentimes, there’s an unspoken expectation that we’ve become apprehensive to break. It’s a constant deliberation—how much slack should I be cutting myself? Am I lazy for not being at the gym more, undoing the damage chemo did to my heart? Am I irrational for still feeling this scared? Am I selfish for spending my day in bed? How much of this burden do I surrender to others? Maybe I’m asking too much from everyone; but what if they’re asking too much from me?

Throughout it all, I’ve discovered a somewhat contradictory silver lining: I excuse much less and ask for much more. Knowing what I want doesn’t remove the fear of being so forthcoming about it, but what I fear more than being seen as needy is the idea of spending my life with people who are unwilling or incapable of showing up for me. I often struggle with the thought that I might be too much, but during my escape from cancer, I’ve run face-first into the realization that “too much” is entirely subjective. I recognize that my expectations might seem like too much for someone else, but that doesn’t mean they should be repackaged as “too much” for me. Every scan day serves as a sobering reminder that nobody is owed witness to a life this fragile. Though goodness isn’t quantifiable, I know it’s something I can expect to feel in those I love, and it’s something I’ve found in those I’ve lost.

No radical acceptance has protected me from the fear of recurrence. Being a teenager didn’t make me invincible, and facing death hasn’t exempted me from the inherent clumsiness of being human. I can expect that from life. I can’t control how people experience my burden; I can expect that from life as well. Truthfully, at times, the next big tragedy feels like an asteroid hurtling toward Earth. But I remind myself—in this moment, life is still happening.

I can still feel the pain from the nerve endings they cut in my arm, and I think of my friend who traded her osteosarcoma for a titanium leg; I remember this life is a misunderstood tragedy we’re all experiencing together. At night, my mind wanders through all the final conversations I’ve had with people, and I try to see my survival as an archive of their legacies.

While I think I’ll always be afraid to expect too much, I’m fairly certain I’ll have tomorrow waiting for me in the morning—and whether or not I stay in bed is a choice I hope I live long enough to forgive.

This article was featured on the cover of the December 2024 Expectations issue of Elephants and Tea Magazine! Click here to read our magazine issues!