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[cancer] The things people say - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-08-01 08:52
Subject: [cancer] The things people say
Security: Public
Tags:cancer, health, personal
I've struggled a bit to write this particular post. It's been on my mind for a while, but finding the right way to express my thoughts has not been easy.

There are things people say to me about my cancer that drive me nuts.

It's not a matter of intention, I know that. And I have no desire to reject anyone's goodwill or good wishes. I know there's not much to be said or done about my cancer from the perspective of a sympathetic friend, acquaintance or Internet connection. Unless you're on the ground in Portland and able to be part of the group of people that help me with errands, housework, cooking and chemo care, there's not much to do except express goodwill and good wishes.

But when people tell me how brave I am, it irritates me.

Bravery is a choice. It is a thing you do when confronted by circumstances. You choose to step into the blade, fight the fire, pull the baby from the wrecked car, confront the bully, whatever it may be. In order to be brave, you have to have the freedom to walk away from the situation.

I don't have that freedom, not with cancer. I have the choice to not accept treatment, but that isn't much of a choice. I'm not brave, I'm doing what I have to do. For me, for my daughter, for my family and friends, for my books and readers, for my future. There's nothing brave about the sorry, sordid business of cancer, chemotherapy and surgery. It's just a thing I do.

Likewise when people tell me I'll be fine, it irritates me.

Again, that is an expression of goodwill. But really, you don't know that. I don't know that. My doctors don't know that. We know the statistical odds for my cancer cohort. We know my prognosis based on my particular health factors and metastasis patterns. But we don't know that I'll be fine. In fact, the odds are somewhere between even (my prognosis) and hard against (my cohort statistics) that I will not be fine, that I will be dead in the next few years. All I can do is go forward and hope.

I think both sentiments arise from a sense of helplessness combined with a frustrated desire to help and support. Cancer still has a special terror in our culture, beyond many other diseases just as serious. For the most part, with a few notable exceptions, it's not a lifestyle disease. Cancer isn't "earned", nor is a punishment from some bitter Calvinist God for misbehavior. It's an assassin in the dark, a random terror that can strike anyone at anytime regardless of circumstance or status or their place in the world.

Beyond that, I understand that people care and want to extend affection, support, even love. So I don't grump at people when they say those things. I accept them in the spirit in which they are intended. But they still strike me oddly.

Curiously, despite my hard core atheism, I don't have a similar reaction to people who want to pray for, or occasionally with, me. I respect what prayer means to those who pray, and take that exactly as intended.

It's not that you shouldn't say these things to me. Sentiments from the heart are sentiments from the heart. But if you really want to do something for me, donate some money to the American Cancer Society or the Clayton Memorial Medical Fund. Even better, donate some time at an infusion center, or doing errands and housework for a chemotherapy patient in your neighborhood or social circle.

Because really, there's nothing anybody can do except watch me walk through the darkness, and occasionally hold my hand. I'm not brave, and nobody knows if I'll be fine, but I keep going.

There is no way out but forward.

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Keikaimalu
User: keikaimalu
Date: 2011-08-01 16:31 (UTC)
Subject: (no subject)
Hear, hear.

It's always been odd to me that anyone who gets cancer becomes transformed instantly, in the eyes of those around them, into a hero and a saint. I had someone equate bravery with having cancer recently, and I wanted to say, "You don't have to be brave to get cancer. You just have to be unlucky."

I think everyone struggles to find that one thing they can say that will help, as much as help is possible. Sometimes you hit the right note, and sometimes you don't.

I wish you well, Jay. And FWIW, I enjoy the thoughtfulness and honesty of your posts.
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scarlettina: Hug 2
User: scarlettina
Date: 2011-08-01 17:05 (UTC)
Subject: (no subject)
Keyword:Hug 2
::hug:: That's what I've got, and I'll give it as much and as often as I can.
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Jo Rhett
User: jorhett
Date: 2011-08-01 17:28 (UTC)
Subject: you are brave
You are brave because you don't run away from it. You stand up, you communicate what you are feeling. You write about on your blog, often. You write books about it.

I have dozens of friends and family who have experienced cancer who tell me that what you say is brilliant and awesome, and they simply couldn't do it themselves. We all think you are very brave.
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curious Eve
User: curiouseve
Date: 2011-08-01 17:43 (UTC)
Subject: (no subject)
I do not mean to sound testy with this, really. I actually want to know what might be helpful or useful to you or someone in your position. Emotionally helpful or useful, that is.

I wish you the best. The best luck, the best outcomes, the best emotional ability to manage the situation. I am sorry for what you're going through. How would I best say that to you, or would you prefer that I say nothing?
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Jay Lake
User: jaylake
Date: 2011-08-01 18:00 (UTC)
Subject: (no subject)
Honestly, the best thing anyone has said to me is, in effect, "Yeah, that sucks." I really don't want to reject good wishes or goodwill, as I said in the post. But cancer is a monster that has eaten my life for the last 3.5 years and may yet claim it completely. I suppose the best thing to say is whatever is in your heart. I promise, I'll take it in the spirit intended. ;)
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19_crows
User: 19_crows
Date: 2011-08-01 17:44 (UTC)
Subject: (no subject)
I've heard the same from a couple of other people I know with cancer. Makes a lot of sense.
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ubiquitous_a: drhorrible-shoulderdance
User: ubiquitous_a
Date: 2011-08-01 18:13 (UTC)
Subject: (no subject)
Keyword:drhorrible-shoulderdance
Perhaps "brave" isn't the best word, but I think that it does take a certain amount of courage to face each day, to continue to cope with all of the additional crap that you must have thrown at you in recent years.

Besides which, I've always thought that the word brave doesn't always mean what people think it means. I think being brave is sometimes the same thing as just not giving up.

Rather than making comments specifically on your illness, I find a great deal of enjoyment in reading what you have to say about various current events and chatting about them with you and your other LJ readers. I have become accustomed to seeing your various daily posts, particularly link salad, and the photo of the day posts that have become a welcome part of my LJ Friends Page every day.

I do admit though, when I read your stories about having to travel while wearing gloves and/or hats in seemingly warmer weather than would require it....I get the urge to knit something and send it to you. That's probably the best way I feel I can offer something of material value that could actually provide some level of comfort.

So yeah....fuck cancer.
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Jay Lake
User: jaylake
Date: 2011-08-01 18:15 (UTC)
Subject: (no subject)
And knitting is good :)
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User: nicosian
Date: 2011-08-01 18:40 (UTC)
Subject: (no subject)
I can only offer written support being on the other side of the country. Hell, if I still lived in Vancouver BC, I'd be more than willing to hop a train and go help....and well, that I always regretted never seeing more of Oregon....

Bravery I suppose people see it that way, but in my late teens I was a respite babysitter for a girl who was going thru chemo and all the followups. ( i fearless of hospitals, I suppose..)

She dealt with it as much as you did, the get in, get through, get it done mentality.It was't bravery, it was a crappy hand dealt an 8 year old and her mom.





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barbarienne
User: barbarienne
Date: 2011-08-01 18:47 (UTC)
Subject: (no subject)
There is no way out but forward.

-->As Churchill noted, "If you're going through Hell, keep going."

I think the "brave" appellation comes because, at least in your public face, you take that attitude espoused above.

As with entering burning buildings and facing down bullies, you have the option of walking away, metaphorically. Not just in refusing treatment--sometimes refusing treatment is the brave decision--but in refusing to just lay down and be a whiny crybaby about it.

(Again, I don't know what you do in private. But I suspect it isn't too much with the whining.)

People who take action are frequently startled by how many people around them never do. Taking action is brave, no matter how much you feel you have no other choice.
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User: brownkitty
Date: 2011-08-01 18:56 (UTC)
Subject: (no subject)
You endure. Whether or not that is brave, I can't tell you, but I think it is admirable. I have also come to find that sometimes we're unable to properly judge what brave is, because we're just doing what you're supposed to do, right?

How do you feel about black humor?

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Jay Lake
User: jaylake
Date: 2011-08-01 19:44 (UTC)
Subject: (no subject)
I love black humor.
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Max Kaehn: Pirate
User: slothman
Date: 2011-08-01 19:05 (UTC)
Subject: (no subject)
Keyword:Pirate

In order to be brave, you have to have the freedom to walk away from the situation.

You could walk away into denial fueled by alcohol or other drugs, or start guzzling tequila every day and declaring “I will thwart my cancer by killing myself with cirrhosis first!” The fact that you don’t even see this as an available option for walking away shows you to be a responsible person. :-)
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2011-08-02 01:47 (UTC)
Subject: (no subject)
Yes. This.
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Twilight: Daria
User: twilight2000
Date: 2011-08-01 20:37 (UTC)
Subject: (no subject)
Keyword:Daria
I suspect the "brave" part is about how you've chosen to deal with it all. Your public expression of the day-to-day, your fight to keep writing, to keep your head up, to make the choice every day to keep fighting - is what people are calling brave.
I know there's not much other choice than to keep fighting - but people make that other choice all the time. You've chosen not only to keep fighting, but to keep producing, to keep telling people how it is and to keep a public face. So many go into deep hiding (because that's what they need, or assume people expect or some other reason) - that you're willingness to face this publically (and thereby help others deal) is a good deal of what's seen as brave.

That's my take on it anyway...

Hope the day treats you well!
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Msconduct
User: msconduct
Date: 2011-08-01 23:17 (UTC)
Subject: (no subject)
Gods, yeah, the brave thing. People with cancer suddenly fall into the brave bucket; others, like my visually impaired business partner, have been splashing about in there all their lives. So weird. I see these health things, whether short-term or lifelong, more as falling into a raging torrent. It sweeps you along and you don't have any choice about it. Bravery doesn't come into it: you're just trying to keep your head above water, a second, a day, a month at a time. And yeah, it sucks.
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User: mmegaera
Date: 2011-08-02 02:00 (UTC)
Subject: (no subject)
This reminds me of a three-month solo cross-country car trip I once took. About half the time it came up in conversation, someone would call me brave.

My reaction to comments of this sort was (and still is) puzzlement. That trip was something I'd wanted and yearned to do for more than a decade. I was never frightened (although I did take reasonable safety precautions). Bravery or lack thereof had absolutely nothing to do with it.

Anyway. Good thoughts on their way to you, as they have been and will continue to be.
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Keikaimalu
User: keikaimalu
Date: 2011-08-02 05:03 (UTC)
Subject: (no subject)
I think I've figured it out.

Being assigned bravery when you're a cancer patient is a sort of consolation prize. "Hey, you're going to lose chunks of your life and body to this, but on the bright side, everyone will laud you and sing hosannas! So, you know, silver lining."

Because nobody wants to believe that the news is all bad. They want you to come out of it with something good that you didn't have before.
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russ: zen
User: goulo
Date: 2011-08-02 12:48 (UTC)
Subject: (no subject)
Keyword:zen
I agree that of course no one knows whether you'll beat the cancer or not, so saying you'll be fine is of course a sincere well-wishing guess at best.

But about this bravery thing... Plenty of people (including some I've seen from very close up) with serious health problems or other crises respond with cowardice, denial, resignation, depression, etc instead of dealing with them as effectively and positively and constructively and honestly as you are doing. So despite your assertion that you're just doing what you have to do, and there's no other real choice, in the real world, plenty of people do indeed choose to deal with cancer or other serious problems differently and less, well, bravely. I frankly doubt I would handle it nearly as well as you are doing. So, sorry if it irritates you, and maybe it's just differing ideas of what the nebulous ambiguous probably ineffable word "brave" means, but I would certainly call you brave (among many other things!). There, I said it. Accept the damn compliment. :P

PS: FWIW I think that a lot of people who rush into the burning building or pull the person from the car wreck, etc, also assert that they did nothing brave and that they just did what they had to do and that there was no real choice.

Edited at 2011-08-02 12:49 pm (UTC)
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Rick Moen
User: rinolj
Date: 2011-08-02 17:50 (UTC)
Subject: (no subject)
In case it'll help, I offer Dana Jennings's gentle dissection of the usual dumbass-yet-will-intentioned verbiage directed at cancer patients. I've found it useful a enough reference that I keep it as link name 'cancer' on my Web site's front-page Dept. of Web-Search Juice. Might be handy if you need to re-find it in the future.

And, after gamely indulging the well-meaning babble, you can always correct the tenor of conversation and get a little payback by teaching about five-year survival rates, doubling times, etc. with unnerving good cheer and sang-froid.

Rick Moen
rick@linuxmafia.com
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Paul Haines
User: paulhaines
Date: 2011-08-03 02:12 (UTC)
Subject: (no subject)
I hear you on the brave thing. Sure, I try lots and lots of things people not in my position would not necessarily do, but I feel I have no choice. It's do or die. If they were in this position, they would probably do them too.

As for the 'you'll be fine' bit - nobody is saying that to me anymore. I've had it too long and it's spread too far.
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