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Jay Lake
Date: 2013-02-01 07:39
Subject: [cancer] What do you say to someone like me?
Security: Public
Tags:cancer, health, personal
Yesterday's post on the hour and manner of my death drew a substantial number of comments on both sides of my blog [ jlake.com | LiveJournal ] as well as on Facebook, many of them very touching. Thank you, everyone. It's an interesting (and sobering) reminder of the journey I'm on, which I've made a deliberate choice to share quite openly.

To that end, I still mean to compose a post on the surgery experience itself. That will come. After I see my medical oncologist on Monday, I'll have something today Tuesday or Wednesday. I don't expect answers from them so much as more questions. Cancer really is a disease of statistics and post facto analysis, and is not amenable to accurate forecasting on a case-by-case basis. In other words, expect more existential confusion on my part.

Several folks asked me what they could say or do, how to talk about this process. My first and most important answer is that this is very idiosyncratic. Everyone in a position similar to mine probably has a different way of thinking of this, of wanting to be approached. Many people are intensely private about illness for a whole host of reasons. Many people seek comfort in religious faith or spiritual practice. Some people just surrender to the process. Some fight to the bitter end.

As for me, I have to say, there's not much anyone can say that's substantive. Expressions of support, whether in the form of good wishes, keeping a candle lit, prayers or whatever, are always appreciated. But mostly, I am fine with an acknowledgment that this situation is lousy. "That sucks, man," sits well with me because it's the simple truth. I really don't need to be treated any differently, I'm still me, regardless of the circumstances. Sometimes a very reduced me, depending where precisely where medicine and my brain are intersecting, but still me.

If you're close enough to me in real or virtual life to offer some specific help, that's good, too. My immediate, local circle of friends and family (a/k/a the Tribe) are very engaged with logistical and moral support on an in-person basis. Other, more geographically distant, friends offer other kinds of support, from running the Acts of Whimsy fundraiser, to acting as my science advisors, to creating art and artifacts that delight my heart, to just sending me bells and funny cards and cool hats and coproliths in the mail.

But mostly I appreciate knowing that my words, my testimony of cancer and its discontents, reach people. It's not that I feel like I'm shouting in the dark, as I am in fact very aware of my audience. It's just that feedback helps.

That being said, I have a funny reaction to some things people say to me. This is entirely my issue, not the fault of the speakers/commentors, but I'm pretty allergic to being told I'm a hero, or that I'm brave. By my own lights, I'm doing what has to be done. I didn't choose this life, I don't want this life, but being a cancer patient is what I am. So I do what I must. To my way of the thinking, there's nothing heroic about my life. Heroism, bravery — those require choices and sacrifice. I don't really have choices any more, and what I have given up has been seized from me by this disease rather than freely offered by me as a sacrifice.

At the same time, much as I believe the story belongs to the reader, I recognize that my experience belongs to everyone else who witnesses it. I have chosen to be public about my illness. What that means is up to each and every one of you reading. So it's not fair of me to cringe from statements about bravery or inspiration if that's what you see in me. It is only for me to acknowledge and thank.

In sum, say what you will. We are all mirrors of one another's souls. What you see in me is what you need to see in me, just as what I see in you is what I need to see in you. I'm not a delicate flower to wilt at the wrong words. I'm just a man, fighting for his life, and narrating that struggle, whether to the bitter end or to a satisfying deus ex machina that might yet lift me free of this tumor-riddled valley of the shadow of death.

My words are my offering, nothing more. Make of all this what you will.

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User: barbarienne
Date: 2013-02-01 16:14 (UTC)
Subject: (no subject)
I'm doing what has to be done. I didn't choose this life, I don't want this life, but being a cancer patient is what I am. So I do what I must.

-->A "hero" is someone people aspire to emulate.

The distinction of the Campbellian Hero is that he does what needs doing even if he doesn't want to. The difference between the CH and you is that the CH also has the crisis point where he can turn back, but must make the choice to go on--that's the real "heroic" moment. With a disease, you don't really have that choice--the disease is happening and there isn't a point where you can say, "Eh, never mind. Someone else will have to defeat the Dark Lord."

But again, the parallel aspect to the Hero is that you could in theory give up and just refuse treatment and let the cancer win. You have blogged often of your knowledge that such a day may come when the treatment options are all done and you have to accept that cancer has won. But in the meanwhile, you keep fighting. You keep writing, whether fiction or blog posts, despite the pain, the medications, and the psychological pressures of having a deadly disease. You keep fighting to be Jay.

And while you may think you have no choice but to fight that fight, the truth is that some people give up earlier, and those of us who haven't faced such a situation look at you and know that while we all hope we could approach a terrible disease with the same inner fortitude, we can't honestly say whether we could.

The choice you have is how you react to your situation. Whether to go all "Oh woe is me, I am A Cancer Patient, pity me pity me" (at one extreme) or to say, as you have, "Well, this is a thing that is happening to me, but I am going to cling to myself with two fists as long as I possibly can."

Now, I don't know what you do in private--I imagine you have times when you despair; you've alluded to them on your blog--but the public face you present is one of emotional strength, and that is what people admire and hope they would emulate under similar circumstances. That is the heroic bit, that you have chosen to handle this terrible situation in the way you have, rather than in any number of other ways.

The funny thing is that so many people who do the right thing (e.g. rescuing a person in danger), or comport themselves with dignity and determination in the face of adversity, don't see themselves as heroes. They don't see the meta aspect of their choice. As with you, it doesn't feel like a choice to them. They do what needs to be done because any other approach is inconceivable.

The point is, it's inconceivable for them. Meanwhile, other people stand around and do nothing, or collapse under the strain, or whatever reaction that is anything other than "This needs doing, and I will do it."

We call people who take action "hero." That they don't make a conscious choice to take action is irrelevant. They acted where others might not, and that is what people admire and aspire to.
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User: barbarienne
Date: 2013-02-01 16:21 (UTC)
Subject: (no subject)
I should add that I imagine this puts some pressure on the "hero" to avoid exposing his clay feet. I know that's how I feel when people express admiration of me for something.

In your particular situation, you've traveled so far down this road for so long that if the day comes that you say, "Yeah, I'm done. Going for the extra large morphine drip today," no one will believe that your feet are clay.
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