Allowing ourselves to be imperfect

I thought the limited time I have left would somehow make me wiser, that it would focus my life like a lens and force me to confront only that which was essential. But that has not yet turned out to be the case. That turned out to be just a metaphor I made up.

I still watch bad TV. I still read about the American election. And I still get angry about things. Here’s a short list of things I’ve been angry about over the last few weeks:

  • The Republicans blocking Obama’s Supreme Court nomination.
  • The rise of Donald Trump
  • The rise of Ted Cruz
  • My mom giving me unsound advice about nutritional supplements and alternative medicines.

Notice that this is not a list of things I should be angry about, or things I would rather to be angry about. I would rather be angry about unnecessary poverty, children dying of malnutrition and curable diseases, continued racism and sexism. (Maybe that last one is captured in my anger about Trump and Cruz, whose words are so abhorrent, I am unwilling to think through exactly what is wrong with them.) And maybe wiser not to be angry at all.

But one thing is clear: what I’ve been angry about ≠ what is sensible to be angry about. And that is old hat.

Having less time to do something ought to mean that you try to spend less time on the trivial. But I’ve been spending more time on the trivial – doing crossword puzzles, reading silly articles in the New York Times, reading reviews of movies I will not likely watch, and worst of all, watching interviews of celebrities on YouTube. And some of my better habits have fallen away: reading and writing philosophy everyday, meditating everyday, exercising three times a week, going to bed at appropriate times, etc.

I guess we have to allow ourselves some imperfection. I am however proud to say that I still floss everyday.

Fantasizing about not dying

I’ve been fantasizing about not dying. I imagine ways in which I’m part of the 4% that live more than five years after a diagnosis like mine (stage 4 pancreatic cancer). I even imagine being part of the 50% who live more than nine months, rather than the 50% who do not.

I imagine hearing my oncologist tell me that the cancer has shrunk enough to be operable. And I imagine the operation and its recovery. I also imagine that the cancer just goes away and that my next CT scan simply cannot find my cancer anywhere. I imagine hearing from a pancreatic cancer researcher that they’ve identified the specific gene mutation for my cancer (whatever that means), and that they, by chance, have medicine specific for it. I imagine the scientists and doctors find a cure for cancer in the next nine months, and this cure is simple and easy enough to be implemented quickly and universally in our healthcare system.

I imagine that I wake up from a terrible nightmare. I imagine that this world is an illusion, that I am a brain in a vat, and when I “die”, I wake up in reality. I even imagine a heaven, where I’m up at the Pearly Gates explaining to God that there wasn’t enough evidence to believe in Him. I imagine being reincarnated as another human being, and that I get to enjoy living once more.

Is this what hope is? Fantasizing about unlikely possibilities? I know clearly that I want to live. I want to live much longer than what the odds tell me. But I don’t expect to. And I cannot plan my life around unlikely possibilities.

What is hope? Is it something between want and expectation? What does your mind do when you hope?

What does it mean to be strong in the face of an incurable disease?

What does it mean to be strong in the face of an incurable disease?

Option A: Close your eyes, and punch wildly and madly at the forces that be, because that’s all you got. If you swing your arms and legs enough, maybe you’ll be left alone.

Option B: Be like Tim Robbins in The Shawshank Redemption, never giving up hope, working slowly and meticulously, struggling to find a way to escape and survive. Believe that hope is precious and good, and that no good thing ever dies. Your survival will be a sign of your strength.

Option C: Be like Mel Gibson in Braveheart, fighting until the end against the forces upon you. You do not expect to survive, but you remain steadfast against your own death. Your defiance is your strength.

Option D: Be like Socrates, and accept one’s fate willingly, as if it were right and somehow just – to accept the deliberations, the unfairness, and the indifference of the forces against you. To be calm until the end, fully realizing what will happen and how. Your calm acceptance of reality is true strength.

Option E: Be angry and be sad. Feel the full force of one’s emotions and doubts, to cry when one needs to, and to allow oneself to be scared. You turn your eyes away from reality when it is too hard to look at it directly, but at other times, you can look at it straight on. To be stressed as fuck. To be grateful for friends. To know both love and loneliness. To feel both cheated and lucky. To feel the unfairness of life and the immense beauty of it all. To despair and to be sad. To refuse to accept the lot of it all, and at other times, to make peace with it. Whether you live or do not, you do not know. Strength at times like this is confusing; trust only that your humanity is enough.

On taking it one step at a time

One of my doctors told me “Let’s not get ahead of ourselves” when all we knew was that there was a mass on my pancreas and something on my liver.

We are, it is true, prone to imagine the worst. And imagining the worst may make you less hopeful and less resilient. (Not sure that’s actually true.) But some of us are prone to imagine only the best. And that can be dangerous too. Filled with hope, like air in a balloon, we may not safely navigate around the sharp edges of reality.

There is some wisdom though, in saying, let’s take it one step at a time, because if we stay with the present, and only the present, we can deal with it, we can see it fully, and we can see how we relate to this moment.

But there is also folly in staying only with the present, and not wondering how things might go – good or bad. No responsible engineer, investor, businessperson, wedding planner, writer, artist, parent, thinks only “let’s take it one step on at a time”. They plan for possible eventualities. They imagine the worst and the best, and the likely things to happen in between. They put money away in case they lose a job. They think about how something might fit on canvas, and not just the point the paintbrush touches it. They save up for a college fund.

I wonder why those of us with incurable cancer are told “let’s take it one step at a time”. Is it because they don’t want us to think about the future? Or do they not want to think about the future? Or are they just avoiding difficult conversations by repeating things that sound wise?

I begin chemotherapy tomorrow. But let’s not discuss that yet. Let’s not get ahead of ourselves.

An uncommon conversation.

A: I know this is a morbid question, but if you get to choose, how would you choose to die?
B: Drowning.
C: Really, why?
B: I heard that it’s peaceful, that it’s like going home.
C: I think that’s a myth.
B: But there’s also something peaceful about the imagery, after the initial struggle for air, you just float there and die. How would you want to die C?
C: I think all death is bad, so I would want to go out the most gruesome way possible. Being eaten alive by a lion! I don’t feel like I’ll be remembered otherwise. But if I were eaten by a lion, everyone’s going to remember. “Do you know C?” “No, I don’t think so.” “He’s the guy who was eaten by a lion.” “Oh yeah, I remember that guy.” I’ll always be remembered.
B: That sounds like a horrible way to die.
C: That’s the point! That way I’ll be remembered.
B: I don’t think being remembered is worth being mauled by a lion.
C: To each their own, I guess. How about you, A?
A: I’d like to die in my sleep, when I’m old, and all my loved ones have already died, so my own death will be no burden to anybody.
B: I didn’t think about it that way. And dying in one’s sleep is painless, like going to sleep and never waking up.
C: Yeah, A, you clearly put some thought into it. I’ll have to think about it some more.
B: What about you, D?
D: Cancer.
B: …
C: …
A: …
B: I change my mind. I also want to die by cancer.
C: Yeah, me too.
A: Ditto.

Do you carpe diem?

Many say carpe diem or YOLO, but they don’t really, really mean it. Not in the deep parts of their hearts. Not in the way they behave. If they truly lived only in the moment, you would not see them pay rent, go to sleep, step over puddles, and you would never ever see them make plans.

I am making no accusation of hypocrisy. I don’t think we should live like this moment is our only one, like today is our last day. “People who live in the present often wind up exploiting the present to an extent that it starts removing the possibility of having a future — Alan Kay.” I have that written in my notes.

But we should live like it is possible that today is our last day, while also living like it is possible that today is the first of several thousand more.

Prepare not as if you are going to die tomorrow, but as if you don’t know whether you are going to die tomorrow or 50 years from now.

Heck, give yourself a bell curve — of expected time left and plan accordingly.

But right now, I don’t know what this curve is going to look like. I have no baseline. Is it going to look like this:

1 year

Or like this?

5 years

I see my oncologist tomorrow, and I’m going to ask about my prognosis. Where does the bulk of the curve lie? Is it one year? Two? Five?

The more, the better.