A Legacy Document

July 14, 2017

 

Tell me a little about your life history. Were there any particular events that were formative?

I grew up in Brossard, a suburb of Montreal.  I lived at home until I was 22, and I did my undergrad while living at home with my parents.  It’s hard to think of specific events that I would call “formative”. There are events that I recall but they don’t seem to be part of my formative experiences. I remember things like being part of the track team, and going to the Provincials. I remember trying to run away from home a couple of times.

The things that seem more formative to me or at least more relevant to who I am today are smaller things. For one thing, my brother and I were in a chess club when we were in elementary school. I don’t think of chess as being particularly important in my life. I do enjoy it and I do play it. But it’s the kind of engagement that I had with chess that was important. It’s rigorous and playful at the same time. It’s the kind of joy you get by working through a plan or figuring out problems that, I think, stuck with me. You can get better at it and enjoy it more, and the better you get at it, the more you enjoy it. And that’s kind of interesting.

One of the other things I did when I was young was to often go to the library, which wasn’t too far from my elementary school. So after school, my brother and I would go to the library, either by ourselves or with my mom or dad. And the books we chose to read would often be in the adult’s section rather than in the children’s. And they would almost all be in the sciences or math sections. They would be books like Stephen Hawking’s A Brief History of Time, which I didn’t understand.  But it’s the kind of books that I read — a lot of popular science books, like Carl Sagan, and a lot of math puzzle books. That was something that both my brother and I enjoyed doing.  We read through them and worked through the puzzles, and that was really formative. It was like my experience with chess. It was the kind of delight you get from not knowing and then suddenly knowing — suddenly figuring it out.  Or not knowing and not figuring it out at all. And then, when the solution is presented to you, it all of a sudden becomes clear. With more patience and more diligence and more thinking, you could figure out the problem and see it in a different light. And you can then see related things in a different light too. And my interest in that kind of activity continued throughout high school and onwards through university. Those were the most positive experiences during my youth that seemed to relate to what I value today.

It’s hard to think of particularly formative events exactly. There are a lot of events I remember, but most occurred when I was a teenager.  But as a teenager, you make awkward gestures, do awkward things, write awkward things, and tell people awkward things. You make bizarre, awkward romantic gestures that make no sense. You get worked up about problems that don’t matter at all: what classmates think about you, if your shirt is cool or not, if your haircut is cool or not. And you care too much about who your friends are. I mean, who your friends are does matter but how cool they are, and how cool they seem to others, doesn’t matter at all. But it seems to matter a lot when you’re a teenager. I don’t know if I have regrets about those things; I think everyone makes those kinds of mistakes — well, maybe not everyone. But most people make those kinds of mistakes and they’re understandable.

I guess one thing that was really formative was the kind of thinking that I was talking about earlier, and how it permeated into other areas of my life. I didn’t just use that kind of thinking in math and chess, but I started using it for other problems that couldn’t be solved easily, ones that are more intractable — philosophical questions about the meaning of life and about how to live it. I see my approach to life as somewhat continuous with those experiences playing chess or solving math puzzles. It’s different, of course, and you don’t get the same kind of certainty about your answers.

 

What have you learned about life that you would want to pass along to others?

I think that approaching your life in a reflective way is really important. It helps a lot to know what your values are, to know what you care about most. You can then think about how you should live: about how your actions and words are going to reflect those values. And it also becomes easier to shape or choose what goals to adopt for your life, which may or may not be the same thing as your values. You can think about how you’re organizing your life and whether you’re doing it in ways that help you reach those goals and reflect who you are.

And you don’t really have to know what your values are with any certainty or solidity. Your values will change, and how you understand them will change. But it helps a lot to think about what they are. Because in doing so, you learn that there are lot of things that are definitely not important to you, and so you know that you don’t need to worry about them.

A lot of the things in life that bother people don’t have anything to do with the things they really care about. And so if you know what you really care about, you can just let go of all the other stuff. It’s better if you’re clear about what those values are and to what extent your life reflects those values. But even the foggiest glimpse of an idea is far more helpful than keeping your eyes closed and following every impulse and acting on any feeling you happen to have.

One of the things I think we should all value is being good to other people and being nice to other people. The writer, George Saunders, said that his biggest regrets in life have to do with not being kind enough and not extending himself enough to others. It’s not that he thinks he was mean; he just didn’t always extend himself enough and help those who were less fortunate than him. I feel the same way about my past. But, unlike Saunders, I do think I’ve been mean. And I regret those times. But I think that we all fail in some way when we’re young. I once tripped another kid just to see what it was like, and I regret that. That was mean. That was an experiment without any concern for the feelings of another.

Being a good person and being good to others is often trivialized. It’s often thought of as unfashionable, which to me is strange. But the alternative is that you should be selfish or successful, to make sure that you yourself are happy — and not worry too much about whether you’re a good person. There are tons of advertisements about how you should “take a you-day at the spa” or how “you deserve this fancy luxury good”. And I think a lot of people feel this way.

I get where that comes from. A lot of us feel this pressure to do good because we see it as an external pressure. We hear it from the authority figures in our culture: our parents, our teachers, our churches. And so people never get in touch with who they themselves are. They’re just reacting to that kind of pressure: “you should do this and you should do that”; “you need to wear a tie or wear a dress”. That kind of reaction makes sense because those forces can feel confining. But being good is more internal than that. It’s more intrinsic. It’s something about your own motivations about what you think is right and what you think is good. And the idea that being a good person is unfashionable is weird, because being selfish is just as old an idea as being good. At least they’re both there in Plato’s Republic.

I think that being a good person is valuable on its own. And it’s essential to being a happy and peaceful person. Without that element, without that sort of foundation, that sort of pillar in your life about the efforts you make in trying to be a better person and in trying to do what is good or right, your sense of self-worth becomes dependent upon other people’s perceptions of who you are. And it makes you liable to insecurities and to fear and to paranoia and to caring too much about what other people think. So trying to be a good person kind of obviates the need to be people-pleasing, the trying to be popular, and the trying to have people think the right things about you. And it’s something that nobody can take away from you. It’s up to you to do.  A lot of the things in our life, and a lot of the ways we measure our life and how well it’s going, depend on things outside our control. But trying to be a good person isn’t one of them. It’s one of the things we own that’s ours. And if you feel confident about your efforts, then the rest is largely trivial.

One of the things that I think is crucial to being a good person and to being a happy person is being open and allowing yourself to be vulnerable. This is something I don’t think I was taught in my family. It’s something that I worry about with them. All three of us, us children in the family, grew up to be closed off, to be very sarcastic and cynical. And I think that we learned to make fun of other people to stop other people from making fun of us. We developed sharp wits so that other people would be afraid to insult us. If we have our knives out, people know to leave us alone.  So often, when we were young, and sometimes now, conversation was really just insults going around the kitchen table.

I don’t know if this is a fortunate fact or an unfortunate fact, but I think that being good and being happy requires being vulnerable so much so that you allow yourself to be broken by things that happen outside of you. And if you are broken, you have to try to be vulnerable again and again — and that’s hard. I understand why people close themselves off. But I don’t think that you can be happy, and certainly you can’t find peace, without that kind of vulnerability.

My friends are more open and less sarcastic than my family. But some of them are single and wish to find good partners. And I think their cynicism about the lack of good people to date, the lack of good men or women, makes them sort of closed off, makes them less open to heartache. So I wish they would be able to find the strength to be open to that kind of pain, which I think love and happiness require.

 

Is there anything you would want your wife to know?

My wife is an amazing person who has always been incredible in the regard I just mentioned. There is in her this persistent willingness to be vulnerable to the world and to others. She sees that vulnerability as a source of strength; she sees it as essentially human. What makes life worth living, if I can describe her view accurately, is the kind of vulnerability we offer to each other.  It’s how we connect. And I share that view.

I don’t always want to be as vulnerable as she does. Sometimes I just want to watch TV, because being vulnerable all the time is really hard. But I am extremely lucky to be married to her. Being vulnerable with her always feels safe, always feels nourishing. And I think anybody would be lucky to have someone to share their life with who has that kind of openness. It can be hard too though, because there have been times where she’s being vulnerable and said something that made me angry. And vice versa. There’s a lot of pain in that, but there’s also transformation and change about who we are after that.

I think it was Adrienne Rich who said love requires allowing yourself to be broken by the other person, and then breaking each other, and then remaking your relationship over and over again. Or something like that. I’m sure that I’m butchering Adrienne Rich’s words, but it’s something like that or at least that’s the sentiment I think she’s expressing.

Now I don’t think romantic, partnership love is essential to happiness. But it is an amazing thing, and I do wish for it for my friends and family who are alone and want it. But if they don’t find it, I hope they can find happiness in some other way.

 

What other hopes and dreams do you have for your loved ones?

I guess a lot of the things that I hope for my friends and family aren’t really material.  I do hope they all have a lot of money. But that’s not something I think is important, so long as they have enough. Money isn’t totally trivial. It’s a crucial part of our lives, and I don’t want anyone to be stuck in poverty and the suffering that poverty can cause.

 

Are there specific things that you would want your family or friends to remember?

Probably, but it feels a little foolish to think about. There’s this gap between how you want people to think of you and how people actually think of you. And almost by definition, you have no control over that gap. Being asked about how I want to be remembered feels like asking to me wonder what I can do about that gap.

But if I had to describe how I want to be remembered, then I guess it’s implicit in what I said earlier. I want people to know that one of the things I’ve tried hard to do in my life was move away from sarcasm, a tactic I used to relied on heavily for self-protection. I tried hard to find the strength to be open to pain without letting it entirely break who I am.

And here’s another thing. Most people in my life already know this, but I want them to know that I cared very deeply about what’s true and what’s good. I care a lot about thinking clearly and thinking critically. Most people know that I think the world — despite its current, apparent descent — is, on the whole, getting better. I think that the history of humanity, looking at it at large, is one of progress: of more acceptance and more diversity; of less oppression and less hierarchy. This feels less like it’s about me, but I am essentially optimistic about humanity and I want people to know that.

 

 

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In Memoriam

In his own words…

Ken Chung died on Wednesday, September 27, 2017, eighteen months after being diagnosed with terminal pancreatic cancer. He wished he had more time to think, to write, to read, to figure out what life was all about. But mostly he wanted more time to spend with his wonderful wife, Emma Abman, and to hang out with his family and friends. He considered himself to be, on the whole, a lucky man. He was 39 years old.

Struggle

If you try hard at something but fail, you experience disappointment. And the harder you try, the greater the disappointment.

This is a lesson we learn when we’re young, but we spend the rest of our lives wrestling with its implications. How can we motivate ourselves to work really hard, when we know that we might fail? And the harder we work, the more bitter the failure?

Here are some ways that I have found to be promsing:

  • Try to maximize the amount of work that you enjoy doing for its own sake, and minimize the work you do only because of its results.
  • Try to find a way to love the process over the outcome.
  • Try to accept the fact that success depends on factors outside our control, and try to allow only what is within our control — for instance, the efforts we make — to affect our state of mind.
  • Try to see that we’re playing with odds here, and that even though we know that the harder we work, the greater the disappointment, greater too is the likelihood of success.

But despite all this, for me to do the hard work, I have to know that there is, at the very least, the possibility of success. It is hard to endure a struggle without at least the possibility of something good resulting from my efforts. To quote from Galatians: “And let us not grow weary of doing good, for in due season we will reap, if we do not give up.”

Here’s the thing about having terminal cancer. You will struggle but then you will die; there is no reward. There is nothing that I will reap in the end for all the efforts I make in dealing with this illness. It was always going to kill me. There is no great payoff in the end for fighting cancer bravely or with apparent wisdom. I will be dead. I will no longer exist to enjoy whatever gains there were to be had.

There is no rest either. We are fond of saying “rest in peace,” of imagining that people who die are finally allowed to rest their weary souls. We are fond of saying this even if we are atheists and believe that death is the end, that there is no person who persists after it. But how can something that does not exist rest? Do the flames rest when the fire is out?

So this is a struggle without a reward. Is this why I find it so fucking hard?

I know, though, that the struggle itself is not all dark. It’s still up to me to make an extra effort to enjoy what I can — to take an extra second to enjoy my coffee, to taste the sweet freshness in the fruits I can still eat, to cherish the warmth of friends and family, to write a word here and there.

Cancer, you will take everything from me eventually. But not yet, you fucking asshole.

 

Years, months, weeks

It would have taken me months to write many more essays. Years, probably, before I wrote a really good one. And it would have taken me forever to understand and figure out all that I wanted to understand and figure out.

But what I got are weeks.

The chemotherapy regimen I’ve been on, Gemcitabine, has stopped working. Blood tests show that my tumour-marker levels are rising. My pain is being managed well, but it is getting worse — it’s clear that my disease is advancing. And my appetite has diminished greatly; eating often hurts.

The most promising treatments are not all that promising. They are phase 1 clinical trials of drugs broad enough for any cancer, whose effectiveness is thus far only speculative and whose dosage has yet to be determined. So at this point, they’re more likely to do harm than good.

And because pancreatic cancer moves so quickly, what I got are weeks.

Before I had cancer, I too had years. And for the last year and a half, I had months. It was only logical that it would turn into weeks at some point. And so it happens now.

Marcus Aurelius once asked himself how he would react if a god told him that he would either die tomorrow or the day after. And he couldn’t see what difference it would make.

 

Is dying a transformative experience?

When you hear that someone has been diagnosed with terminal cancer, it isn’t too hard to be philosophical about it:

  • “That’s awful. But such is life.”
  • “Misfortune can befall any of us, can’t it?”
  • “We never know when our time is up. We must do what we can to live the life we’ve got and appreciate it as we go.”

But when you hear that you have terminal cancer, you think: “Fuck, fuck, fuck. Why is life so fucking unfair?”


In 1974, the philosopher Thomas Nagel wrote a famous paper called “What is it like to be bat?”1 In it, he made the observation that a bat experiences the world probably quite differently from the way we experience the world. And he argued that, in fact, a bat’s experience is so different that we, being human, cannot in principle know what it’s like to be a bat. We can imagine ourselves hanging upside down, eating bugs, using sonar to navigate, and so on. But we’re doing just that: imagining ourselves doing the things bats do. What we’re not doing is imagining what it’s like to be a bat.

This difficulty, of imagining what it’s like to be another creature, is not just there between a human and a bat; it’s there between any two creatures, even when they’re members of the same species. I can imagine, if I try hard enough, what it’s like for me to be in your shoes. But can I imagine what it’s like for me to be you in your shoes? I can imagine myself living your kind of life, but I can’t really imagine what it’s like for you to live your kind of life.

We relate to each other because we have something in common. That’s why it is hard to a relate to a bat, or people who are very different from us. I think this is why small talk exists. If you and I can talk about the weather, then there’s something we can agree on. Now that we’ve established that we have something in common, we can relate to each other.

Deeper connections between two people, though, need more than small talk. They need ground that is not only common but important to both of them. Think of those who share a common struggle: players on a sports team, soldiers in a platoon, students in graduate school. Many of these relationships do not last when the individuals no longer share the same goal, for example, when a player gets traded or when a student drops out of school. Some friendships do last, long after the shared purpose has ended — when the war is over, for example. But the friendships between soldiers persist largely because the history they share matters to who they are now. Few veterans leave that consequential aspect of their lives out of their self-conception.

And those who have been friends for a long time often choose to talk about the past rather than the present. It’s the past we still have in common. And it’s the past we rely on, even when everything in our lives seem to change. We change beyond recognition, and yet, when we get together, we talk about that time we fit all eight of us in the car and Sam, god bless him, volunteered to ride in the trunk.

There’s a gap between us that we don’t want to shed light on. Some things stay the same, but many things do not. What we have in common becomes increasingly diluted by the new important things in our lives: our marriages, our children, our divorces, our new careers, our recent struggles. We think if we put in enough effort, we can imagine what our friends go through. We can imagine what it’s like to have children (or we can remember what it’s like not to have children) and if we try hard to enough to imagine (or to remember), our friendships can still grow.

But here’s where Nagel’s bat swoops in. I don’t know if I can imagine what it’s like to have children. And I don’t know if you can imagine what it’s like to have terminal cancer.


The philosopher L.A. Paul has recently argued that becoming a parent is what she calls a transformative experience.2 This may sound like some purple poetic expression, but it’s a technical term and she means something specific by it. For an experience to count as transformative, (1) you have to learn something you could not have learned without having had that experience, and (2) after having had that experience, you think of yourself differently, or orient your life according to different values. This means that you cannot imagine what it’s like to have a transformative experience, because otherwise it wouldn’t be transformative: the experience tranforms you so much that you are now a different person and you could not have known how you would be different beforehand.

I don’t know if becoming a parent is really, truly a transformative experience, but it probably comes as close as anything. My wife and I tried to have children, but luck again wasn’t on our side. So I will never know what it’s like to have children. I do not know how it would have changed me and what I care about. If you think I’m trying to make this sound sad, I should let you know that Paul is clear in saying that transformative experiences are not inherently positive or, for that matter, inherently negative. It isn’t necessarily good or bad to have them. Precisely because they change you, you cannot know if they are good or bad: if we have not had a transformative experience, we cannot say that it would be good or bad to have it, since we do not know what it’s like; and if an experience changes us fundamentally, we cannot say that it was good or bad for us since we cannot compare it with how things were before since we no longer see things the way we used to.

I don’t know if having a terminal illness is a transformative experience either. Other than hearing the words “it’s incurable” or “your prognosis is months”, being as sick as I am bears no unique phenomenological experiences. There is no sensation to dying (at least not yet). There’s pain, to be sure, and the pain feels different and I feel it in strange new places. But the pain doesn’t tell you it’s dying pain. There’s fatigue also, but we’ve all been tired before. And now, just because it lasts longer and persists despite the usual remedies, the tiredness doesn’t tell you that you’re dying. There are also side effects in treating the illness, but none of those tell you that you are dying either. After all, the same treatment with the same side effects is given to those for whom the disease is still curable. All this probably explains why so many of us do not accept our fates — having one’s illness be terminal doesn’t feel like anything special at all.

There’s only this to the experience: the recurring and constant pain, the fatigue that lasts for days on end, over and over again, the nausea and the headaches, and the ever increasing portion of your time spent inside pharmacies and hospitals, going to them, coming back from them, with doctors and nurses and other people there to help you, with tubes and needles, putting fluids inside you while extracting others. My illness has become my life, or at least a large part of it. But those who have terrible but curable illnesses also live this kind of life.

So what tells me I’m dying? There’s no gut feeling — no gut knowledge that I only have so much time. There’s just my doctors’ words buttressed by data that only they can intelligibly interpret. (One might take all this as reason for me to distrust my doctor and hew my own way. But what it really shows is my unavoidable dependence on experts and how there’s only so much epistemological value to my feelings.) But there is something to knowing that you have a disease that’s going to kill you soon. If you accept that fact, and acknowledge it deep down and in all the things you do, I think it does transform you.


The young prefer spending their time meeting new people over spending it with those they already know well. They are preoccupied by questions such as, “what will I do next?”, “will I become successful?”, “what should I do to become successful?”, “will I find my soulmate?” But the elderly, it seems, are different: they prefer to spend their time with family rather than strangers, and with old friends rather than trying to make new ones. And because they know their time is limited, they want to spend it on everyday pleasures and the people they know they already love.3

When I was young, my family and I would make a yearly visit to New Jersey where my great aunt and her family lived. We would stay there for a week or so and play around their large house, as my mom’s extended family would dote on us. But whenever it was time for us to go, to begin our journey back home to Montreal, my mom’s aunt would cry. She was always a little frail, and I had wondered then, as I wonder now, if she was preparing herself to say goodbye for the very last time.

I do that too now. Friends visit from far away, and I wonder if it’s the last time I will ever see them. Friends talk about visiting me in four or five months, and I wonder if I’ll be around to receive them. I went to McDonalds a few weeks ago — I have a small but special fondness for the place — and I wondered if it was the last time I’d ever eat there. Epictetus counselled that we do that on purpose: we should try to imagine each meeting with a loved one, each experiencing of an ordinary pleasure, as possibly our last, even when we’re not terminally ill, so that we may learn to appreciate what we have and not dwell too much on what we don’t. He thought it would change us for the better. I have tried to follow his advice for many years, long before I was sick. But it was hard to do in any real capacity. Now it has become part of my everyday. I’m no longer sure if Epictetus is right about whether this practice changes us for the better. But I do think it changes us.

So what this means is that there is this gap between me, who is dying, and you, who are not. If you are young, you still want to do things that can shape the rest of your life. If you are older or if you are sick like me, you might not care so much to shape the rest of your life as much as to live it and appreciate what you can. These differences between us are unavoidable and understandable. But it means that no matter how much some of you are there for me, I still feel alone. You do not know what it’s like to be dying, and you probably can’t know, until it happens to you.

I suppose this is why support groups exist. Only other people who are living with cancer knows what it’s like to live with cancer. Only others facing a terminal illness really know what it’s like to face a terminal illness. And when I go to these support groups, I do feel less alone. But only for a short while. Not everyone at a support group is dying, and not every dying person accepts that they’re dying. But more to the point, these people are not my friends or my family, and, being short on time, I’m not interested in making new friends.


I’m not the only one this illness has transformed. It has turned my wife into someone whose husband is dying. And it will eventually turn my wife into a widow. I do not and cannot know what it’s like to watch your husband or wife suffer through this illness, and I will not know and cannot know what it’s like to lose the love of my life. I can only imagine what it’s like for her now and what it will be like for her then, and she can only imagine what it’s like for me – and we both know that such imaginings can only give us the barest outline of what our experiences are like. There are two of us transformed by this illness, but in different ways. My wife and I are both left a little alone by this illness, left incompletely understood, even by each other.

But despite that, we are here for each other. And even if none of my friends and family really understand what it’s like to be dying or what it’s like to have a husband who’s dying, they are here for us — unwavering and stalwart. Now that life seems so fragile and short to me, all this seems like a wonder.


  1. Here’s a link to Nagel’s article. ↩︎
  2. See Paul’s “What You Can’t Expect When You’re Expecting” and “Précis of Transformative Experience both available on her website. ↩︎
  3. See Chapter 4 of Being Mortal by Atul Gawande. ↩︎

On the strangeness of hope

I.

I don’t believe in God, but when people say they will pray for me, I appreciate it unequivocally. When someone prays, they know that it is a request entirely up to God to grant or not. When someone says that they hope I get better, I wonder if they know that the 5-year survival rate for Stage IV pancreatic cancer is 1%. I wonder how facts affect their hopes. I wonder what they mean by “hope”, if they’re just telling me what they want. When people say they hope I get better, I’m not sure what they mean, but still, I appreciate it.

When people want me to hope, I am confused as to what they want me to do. Do they not know that I also want to live? Do they want me to ignore the statistics? What exactly do they think I can do that I’m not already doing?

II.

Suppose we say that Sam hopes the Raptors will win their next game. It seems as if (1) this hope involves a relationship between two things: the person and the future, and (2) that this relationship goes in both directions: the future can affect Sam (depending on the game’s outcome, Sam may be elated or dejected) and Sam can affect the future (somehow her act of hoping can help the Raptors win). Yet somehow, this relationship is entirely up to Sam: she can hope or she can not.

But hoping that your sports team is going to win isn’t really going to help your team win. Remember that the other team also has fans, and they’re hoping that your team will lose. So unless Sam’s hoping is more special than theirs, her hope is, in all likelihood, completely ineffectual. Still, Sam could hardly call herself a fan if she did not have such hopes for her team. In fact, the bigger the fan, the more one hopes.

During the Vietnam war, the vice admiral, James Stockdale was captured and kept prisoner for seven years. When asked about his experience, Stockdale said that he “never doubted” that he would get out and that he would “prevail in the end”. He said that this “faith” is something you could never afford to lose. So, for Stockdale, hope seems to be a vital thing — something that kept him alive and allowed him to survive in the most difficult of situations. It afforded him patience and perseverance.

Other cancer patients often talk about hope too, and how we have to keep on hoping and fighting. People often counsel me to keep faith, as if not hoping meant both despair and a quicker death.1 I’ve written before about how we, the sick, can feel a lot of unfair pressure to keep on hoping, as if hoping can help us survive and beat back our cancer. This view is widespread but false.2

Hope can also be dangerous. When Stockdale was asked about who didn’t make it out of Vietnam, he replied,

Oh, that’s easy, the optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.

Hope, it thus seems, is a delicate thing. One must hope, but not too much. Some hope may be needed to act, but not so much that it turns into wishful thinking.

But even if you figured out the right balance, how do you hope? If I tried to hope, what would I do?

III

The philosopher, Luc Bovens, proposes3 that the act of hope involves a kind of mental imaging of the thing desired. You picture in your head how your favourite sports team will win at the last minute, or how it will be nice and sunny at the park tomorrow. And it seems as if the more you imagine, the more you’re hoping.

You can’t, however, just imagine anything and call it hope. You might imagine you and your fellow citizens besieged by foreign invaders or persecuted by an oppressive government to try to understand what others have gone through without ever hoping to be in a similar situation. You can imagine conquering Asia alongside Genghis Khan, or imagine yourself a Jedi knight fighting against the Empire. But unless you have a weak grasp on reality, these imaginings do not count as hopes. Hope, then, seems to involve imagining not just something you want, but something that is at least within the realm of possibility.

But interestingly, hope also involves acknowledging that what you desire is not entirely within your control. While you might hope to fall asleep after you lie down, you wouldn’t at the same time hope to lie down. If something were entirely in your control, you wouldn’t hope for it: you would just do what it takes to get it.

When some people hope, they think that their hoping can affect the outcome. They think that their positive thinking is limitless in its power. But in so thinking, they’re denying what is essential to hope: the recognition that what you want is not entirely within your power.

IV

So what good does hoping accomplish? One might think that it does no good at all. Suppose that you hope it’ll be nice and sunny during your camping trip. You form pictures in your head about how nice it will be, while acknowledging that you cannot control the weather. Either your hope will be realized or it will not. If the weather is bad, you may be disappointed – more disappointed than if you had not hoped at all. But if it turns out sunny and nice, it will not likely be good as you had imagined — what can compete with our imagination? And even if things turn out so fortuitous that it was as exactly as good as you imagined, you’ve robbed yourself from the pleasure of being pleasantly surprised. So hoping does no good, and it often make things worse.

But maybe what’s good about hope has nothing to do with whether it makes things better. Maybe what’s good about hope is what it means about who you are, what you care about, and what you’re willing to go through. When you hope for something, you allow yourself to be disappointed by the future. When you hope that someone else will get better — and I mean, really hope, with all the imagining and the wanting and the acknowledgement that it is outside your control — you are allowing yourself to be saddened, to be broken, by someone else’s suffering or untimely death.

So while I’m not sure what idea of hope people have when they hope for me, it feels like an honour. It’s as if they are telling me that they are willing to be saddened and disappointed by my death and my illness — that they will not close themselves off from whatever pain may come.

But I remain confused about what it means for me to hope for my own survival. If hoping means opening yourself up to disappointment, how can I hope? How can I be disappointed by my own death, when I’m not around when it happens? Still, strangely, I hope.

An update on the disease

My latest scan shows that the once, tiny tumours in my lungs have grown in size and that new tumours appear in lymph nodes in my chest. There’s also a large tumour in my stomach.

Before this, I had known only about a few small tumours in my lungs, in addition to the ones we knew about from the beginning — the ones in my pancreas, liver, and nearby lymph nodes. The disease had largely been confined to a certain section of my body, a part I would point to and call the “belly”. The metaphor of cancer as a kind of invasion had not yet felt accurate. But things have changed, and the word seems apt. I am being invaded. I am losing control of my body to something else, to something uninvited, and at some point there will be no more me.

Each treatment I have been on has been less effective than the one before it. I was first on FOLFIRINOX, a chemotherapy that left me fatigued for days or weeks, making me nauseous, thinning my hair, and causing neuropathy. But it was effective for eight months. Then I was on Afatinib, an experimental drug with very tolerable side effects. But it only worked worked for four months. The third and most recent drug I’ve tried, T-DM1 (or Kadcyla), left me with debilitating headaches for days. And it may or may not have triggered two incidents of vomiting blood. But T-DM1 only worked for a few weeks. And so I will start Gemcitabine soon, an old drug, one that was once standard for pancreatic cancer.

When I was diagnosed sixteen months ago, my oncologist told me that the average life expectancy was ten months. In those sixteen months, over 60 million people in the world have died. Many of them have died to due to old age. Many to disease, many to war, many to poverty. When we think of it in in the abstract, as a thing that happens on the order of millions or more, it’s hard to fathom. It is hard to understand that each of these people were living, breathing human beings, with their own stories and goals and dreams. You can try to imagine sixty million pairs of hands reaching out, working, making the stuff of life. But we can’t really imagine what “sixty million” looks like. We can’t even imagine a million. In fact, when we form a picture of sixty million people, it doesn’t look that different from our picture of just one million. But the first is sixty times greater than the second. And that’s a conservative estimate of how many people died in the last sixteen months.

I have often said that it was just a matter of chance, of bad luck, that I got sick. There was nothing I did that lead me to this situation — nothing I did to deserve this cancer. This is not because I am such a good person or because I know all about who deserves what. Rather, I did not deserve this simply because nobody deserves this. And it has nothing to do with “deserve” anyway.

But likewise, the fact that I have lived as long as I have with this disease, 60% longer than average, was also a matter of luck. It was just chance, and an unlikely chance, that my cancer cells manifests a particular mutation for which particular drugs exist. I’ve done nothing to deserve this fortune either. I did not pray, I did not consume strange concoctions of alternative medicine. And I am most certainly not a man of indomitable strength or will. All I did was listen to the advice of my doctors and follow their instructions as best I could.

I wonder how long I have left, but this is hardly the first time I’ve wondered about that. I have tried, over and over again, to come to grips with the fact that I’m going to die. But it has gotten easier each time. When I try to come to terms with something, I often look into its crevices, and I try to examine all that it is and all that it entails. Every time I do this, the emotions it brings up become weaker. And I begin to feel a little bored with it – not so much that I reject it or ignore it. Rather, it becomes a boring fact like the weather, something to live with and to complain about only a little.

So I don’t know how much time I have left, how many more drugs I can try or how well they will work. These drugs were never meant to stop the disease or to kill it. It was only ever meant to slow it down.

It isn’t easy to come to terms with an invasion.