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.