Note: this is a part of an email and real life conversation I am having with a friend about people living with terminal diagnoses. After sharing my thoughts on When Breath Becomes Air he suggested I watch a video about Claire Wineland and asked me what I thought. This was my response.
I took some time to reflect on this. I mentioned that earlier this week, I read When Breath Becomes Air by Paul Kalanithi. He was a 35-year-old neurosurgeon and aspiring neuroscientist. He entered that field because he found it to be the most efficient way to explore man’s interpretation of existence…he wanted to learn what gives life meaning and to do that he studied both literature (man’s written interpretation) and the science of the brain (what makes it be).
What I find most interesting about both stories is the respective characters’ conscious exploration of the tension between what is supposed to be and what is.
We all know we’re not guaranteed a tomorrow. But humans are not good at projecting events over long time arcs. So it is no surprise that we are miserable at truly understanding how soon our death may come. This all changes for those who facing terminal diagnoses. Most interestingly, though, in neither case (nor generally in medicine) do they have clarity on when. So while they know they will die “soon” there is no exact time.
What I’ve found most fascinating about both stories is how the close proximity of the end reorients them to the present moment. I’m not so much interested in the fact that they live in the present as I am in observing a) what that actually looks like and b) the very present tension they fight between what a life is “expected to be” and what they want theirs to be. But each of them has a different struggle. I learned from the contrast.
In Claire’s case, thanks to her youth, she is less programmed in the heuristics of life. She has less to unlearn. Conversely Paul (the writer of the book) is 35 when diagnosed and is in the middle of the very programmed path of doctor/scientist. His basic struggle is the same as Claire’s but with the added complexity of exploring what it means to live a life you are proud of versus what he’s been programmed to do.
He struggles with figuring out what he wants. And his greatest tension is with not specifically knowing when he will die. If he will die in ten years he should do X because X takes 7-10 years to complete. If two years he should do Y because it’s more short-term.
I don’t think I would gain as much from either story if I hadn’t encountered them in sequence.
This is all very similar to how as kids we play and as we grow we play less. We play less not because we hate laughing but because we are programmed to see play as childish…bad. To return to our child-like state we must unlearn so much.
I recall my own experience of exploring what I call internal orientation which is otherwise thought of as marching to your own beat, keeping your own score, etc.. For years I read all of the self-help gurus’ explanation of doing your own thing. And then I lived it. And the experience was completely different than both what is written and what I imagined it would be. It was much harder to break away from the heuristics.
Similarly in the case of death I’ve read extensively about living in the present moment because “tomorrow may not come.” And in these two cases I observed it on opposite ends of a spectrum.
I would have been inspired by Claire if I encountered her story alone. But seeing it contrasted against someone whose life experiences made it harder to follow the present path was the most powerful. It made the value of unlearning much clearer.
Claire summed it up best when she said “live a life you can be proud of.” That has a hint of Jeff Bezos’ regret minimization framework.
Bezos’ states that we should think about what we would regret when we are 80. His view is an inversion of looking at the future from the present state. Both are useful. But when your life is surely going to be short but you don’t know how short, you can’t look at it from the position of 80 year old you.
So in a sense that forces you to be more present-state focused. You don’t have the luxury of waiting. So you must be proud of every moment. Right now.