I thought of writing about my experience once I’m all better, when I’m on the other side of it, when I can safely say, okay, I am in remission (I love that word: remission, music to my ears).
But on the other hand, there may be value in writing this not knowing how things will turn out, when things are raw, when I try to push the thoughts away but am gripped by this thought, “OMG I don’t want to die.”
End of February, I received a cancer diagnosis that turned my life upside down. This kind of cancer (sorry I am maintaining some privacy about the type—not that there’s any shame but I’m trying to balance privacy and being open) normally affects people in their sixties. I was struck with disbelief: how is this possible? I don’t smoke (ever), drink (ever), eat mostly plants. I exercise daily and go for annual check ups. The thing is, these things don’t guarantee that you will live a long life. They help increase your health, and I hope they improve my chances as I go through treatment. But there are no guarantees in this life.
There is a kind of secular faith that if we do all the right things that we should be fine. It’s an insidious, toxic idea, one that sidelines and stigmatizes disabled people. Surely, they must’ve done something wrong. (In a similar vein, poor people are stigmatized). I think this secular faith lies at the root of long covid denialism. The idea that a rampant illness can suddenly strike you, a previously healthy person, and render you bedridden and unable to perform basic activities is just …unthinkable. So we don’t think it. I thought I was immune to this secular faith (do all the right things, and things will turn out fine for you). But it turns out I’m not.
I’m in treatment. It is treatable. But the outcome is not certain. I may still not survive my forties. That thought for me is unthinkable. Still, I force myself to think it—to confront it. Not in an endless spiral, but sometimes at least, I try to aim (not very successfully) for Stoic calm. When I first received the news, my thought was that my life has been in vain, that my family cannot possibly survive without me, that all my work is worthless.
But gradually I’ve landed on this thought: a brief life can be good and worthwhile, it’s obviously preferable to live a few more decades, and I sincerely hope I will. But my life would not be worse overall, the shape of it, if I were to die in my forties. I am immensely grateful for all the wonderful experiences, chances, opportunities, the many gifts of life, the opportunity to connect to so many people. And it would be hard on my family, but people are resourceful and find ways.
I cannot understand people like Bryan Johnson (the tech entrepreneur weirdly focused on life-prolonging and rejuvenating treatments) for whom longevity in itself is the goal. It’s good that our lives are long and that we get to do many things in it, but a life like his, pursued solely with the aim of making it longer, I do not understand. I don’t feel it’s a good life.
Some people get a diagnosis similar to mine, plus the news it has spread too far to be treated successfully. This is fortunately not me. I’ve had two surgeries and more treatment awaiting. I wrote this about a week after surgery, hence it’s a bit raw and unpolished.
But, at some point, it looked like it would be worse, and I felt so bleak. This is when I discovered that what CS Lewis says in A Grief observed is symmetrical. Grief is a lot like fear, he writes. But I think fear is a lot like grief too. I felt an immense, crushing sadness that overwhelmed me. It’s just so surreal. I don’t want to feel sad for myself. I hope to come out of this and share with you more any insights gained, think more about how the things I can still write could be of benefit in this opaque causal network I am a part of.
I want to end with this beautiful Polish poem.
A Prayer That Will Be Answered By Anna Kamienska (1920 – 1986)
Lord let me suffer much
and then die
Let me walk through silence
and leave nothing behind not even fear
Make the world continue
let the ocean kiss the sand just as before
Let the grass stay green
so that frogs can hide in it
so that someone can bury his face in it
and sob out his love
Make the day rise brightly
as if there were no more pain
And let my poem stand clear as a windowpane
bumped by a bumblebee's head
Polish; trans. Thomas P. Krzeszowski & Desmond Graham
Thank you for sharing. I'm cheering for you and hope you fully recover.
Thank you so much for these courageous words. I was moved by them. And intrigued by the poem: I assume the poet is the first name, after trans. ?