But at what cost?

Tell the darkness I did not die.

-Ijeoma Umebinyuo.

The Sunday night before my final round of radiation, I ended up in the emergency room for what we thought would be a quick visit because I had a fever but turned out to be a five day stay in the hospital. I had the flu, but even more alarmingly, I was very immunocompromised. My white blood cell count was so low, I spent the five days in hospital in isolation.

I got through that time in hospital the same way I got through the treatment process: by not paying enough attention to the ever encroaching feeling and awareness: that staying alive (the long game) required risking, but trusting my body not to kill me in the meantime. To intentionally engage this reality would, to a certain extent, require that I mourn the parts of me that were already dead or just ripped out of me for the greater good. But do you know how bratty it is to begrudge reduced hearing on your right ear, or the surgical removal of nearly half your upper jaw in the process of excavating cancer cells from your head? But perhaps more importantly, it would mean that I face, not necessarily to make peace with, my mortality. It would be like sitting across the table from death, and in between ungraceful sobs saying, “hey, I know I can’t win this. But if it matters at all, I would like a few more years.” And death just shrugging, the “we’ll see” implied.

I’m a coward. And a little proud. So I mostly just slept.

I had shuffled my body to and from hospital visits, responded with the generic “I’m alright” to inquisitions about my health and soon enough, I managed to mould my emotional and mental wellbeing after the nothingness of my many physical deaths. The trick is to tough it out through the initial pain because eventually, the tissue heals and the scars dry up and if you don’t look or touch, you don’t have to deal with it. The only downside to this system is that people who are unaware of it will occasionally say something or hug you too tight and your well-rehearsed- awkward but lighthearted-“the right side of my face is a bit fragile” line won’t come out of your mouth fast enough to beat the tears. Other times, it’s a series of events. I got my series of events on the second day in hospital, on the Tuesday that I got my final round of radiation.

I had thirty five rounds of radiation. For thirty four of those, I walked into the cancer centre, waved and smiled (and as treatment progressed, merely twisted my lips and hoped he understood) at the security guy and the entrance, got onto the elevator to the basement, changed into a gown unaided, walked into the radiation room, exchanged pleasantries with the technicians, lay on the table, got an “everything looks perfect” from one of the technicians and got through the session without drama. For the last round everything was different. I arrived at the cancer centre in an ambulance and entered the building lying down on a raised stretcher. Right at the entrance, I turned to the security guy because of all days, I wanted to be able to smile and wave at him. Only this time, he twisted his lips and hoped I understood. In that moment, I knew there was no way I was going to get through the day without crying. So I bit my lower lip and cleared my throat counting down the minutes till I got into the radiation chamber because then I would have a mask over my face and ten minutes to myself. Again, I was wheeled into the radiation room and helped onto the table. I thought I was handling it fine, all things considered, but right before the session began, I threw up. And then I cried. The technicians let me compose myself and then laid me back down on the table.

On the first day of radiation, the first time she told me everything looked perfect, I rolled my eyes thinking, “my face and shoulders are clamped down to this table with an incredibly tight mask and you’re about to shoot beams of radiation into my face.” Over time, it became a form of assurance I didn’t know how badly I needed until the last day. She didn’t bother to say it. It would have been a lie. I had vomit in my mouth and wet anger in my throat. After the session, the technicians clapping and smiling, presented me with a certificate to mark my completion. This time, I caught the emotion in my chest, determined to lock it back in the graveyard my stomach had become. In the waiting room, I shoved the certificate onto my cousin’s chest, deciding there and then, that I would never look at it again. I had gotten this far by numbing my humanity, I wasn’t going to resurrect it. Because who knows what undead things it would drag from the pits of my stomach?

But the day wasn’t done with me yet.

Back in my hospital room, my nurse got her colleagues to surprise me with balloons. Dripping in and out of consciousness (yay morphine), I awoke to shrieking in my room. In my field of vision, tens of nurses all wearing masks over their mouths, sanitized gowns and caps. It was the effort that got to me. That she went out of her way to convince other nurses to leave their patients for a minute to do something nice for the immunocompromised girl down the hall. In one of the few instances where leaving someone alone serves to keep them alive, they took the necessary health measures to make me happy. I wept. It was one of the very few times I acknowledged that my circumstances have sucked balls for months. I let myself quietly celebrate that my body was out of the battle field now. It needed emergency medical transfer to get out, but it was out.  

In the weeks since I finished treatment, I have had to relearn not to suppress my emotions or avoid dark thoughts. I am failing miserably. I still refuse to revisit what going through this illness did. I’m done with treatment, so why do that? But I’m also succeeding in little ways. I am acknowledging that I’m not particularly enthusiastic about this life I wasn’t ready to lose. It’s a mind fuck. It makes me feel ungrateful. Before you have a near death experience, you think it would make you brave, more embracing of life. And in some ways it does. But not in spectacular-go-sky-diving-kind of way. It clarifies things. Which is both a blessing and a curse. There’s something about realizing that you didn’t think to reach out to someone when you thought you were dying that makes it so easy to delete their number. All through this illness, not once did I wonder if I made a mistake not pursuing actuarial science, a lingering, anxiety-inducing doubt before I got sick. I mostly just worried that I might never get the chance to practice my fiction, to maybe write a collection of non-ficton essays. Now, I couldn’t possibly convince myself to go back to Actuarial Science. That’s terrifyingly clear.

Almost dying has also made me afraid and anxious. I have an acute awareness of the things I want out of life and an understanding that I might not be alive long enough to achieve those things. We all know we’re gonna die and think that we go through life with that awareness. But there’s something about having a few very real options about the things that could kill you that completely shifts the game. Your death stops being an amorphous thing that you have no control over and can therefore ignore. It instead becomes a game of hide and seek. You begin to think if you live a certain way: if you avoid certain places and do certain exercises or avoid certain foods, you can manipulate your death into leaving you alone for a while. But it never quite works. Every so often, you find yourself on the floor immobilized by how futile it all is. Once your death sits on the floor with you, it never quite leaves no matter how hard you scrub the floors. I am constantly out of breath. I will always be out of time.

Knowing this: that my life is always going to be a marathon, is an endless source of grief. It is a quiet grief: it just sits there, not really rapping at my chest but pressing hard enough that I have to catch my breath sometimes. Just last week, I closed the door to my room intending to write, but instead ended up crying on the floor. I have these mouth exercises that I have to do to increase my jaw’s mobility. So I basically put this machine in my mouth and stretch my jaw until it’s a little uncomfortable, then hold it there for seven seconds. I have to do this forty nine times a day and hopefully over time, I can open my mouth as wide as most people. I don’t like these exercises obviously. Most times, I don’t dwell on this. But that day I went through all the things I have to do for the rest of my life to maintain a semblance of a normal quality of life. I have to wear an obturator because half my upper palate will never grow back, I have to sleep wearing fluoride dental carriers because I can’t risk getting cavities which would require tooth extraction and I can’t risk that because having gone through radiation, that would never heal. And then, there are the functions I will never regain. My salivary glands will never produce enough saliva which means I’m always going to be at risk of cavities (it’s a game I can’t win). I am losing my ability to hear high pitched sounds, I need a tube on my right ear so it functions okay.

I understand and am resigned to my little rituals. I am even grateful that there are things that I can do so my face doesn’t look like it’s been burnt and dug into, so I can hear and speak and eat and laugh. But I also deeply resent that this is what my life has come to. I feel wronged, but the harm has been mitigated so much so, that I would seem unappreciative if I dare grieve. I am committed to doing what I have to do to stay alive. But I also know that I don’t like my life that much anymore. It makes sense to me to suffer through life right now, but I also know that my endurance will only get me through the next decade or two. I won’t always be invested in living my kind of life. I’m only alive because my death has been suspended. If my body doesn’t give out first, my mind will start courting it.

I am alive. It doesn’t always feel worth it though.


Photo by Mads Schmidt Rasmussen on Unsplash

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6 thoughts on “But at what cost?

  1. Clarie 💛💛💛

    I have no words. There’s never a right thing to say.

    But I am grateful that you are still alive. Sending you all good vibes. Sending you joy and laughter. Sending you a smile even on a hard day, sending you hope, sending you love. 💕💕💕💕


  2. If anything, you being alive enough to share your writing with the world is enough. You have such a deep beautiful gift. The struggle may be personal but your spirit is so inspiring and what makes us relate. This made me tear up a bit but I am grateful you are still here, and yes it is worthwhile. Even when it doesn’t seem like it. Sending you nothing but love and grace Clarie.



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