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[cancer|personal] On unfairness and despair - Lakeshore
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Jay Lake
Date: 2011-10-03 05:50
Subject: [cancer|personal] On unfairness and despair
Security: Public
Tags:cancer, health, personal

My cancer emotions run a pretty wide gaumut through the obvious. Anger, depression, grief and so forth. In truth, those three haven’t been so bad lately. But the two I wrestle most with in a different sense are a sense of unfairness and a sense of despair.

Unfairness is the only emotion I don’t give credit to. I can see the reasons for all the other emotions that hit me, the needs they express and the psychotoxins that they are drains for. Unfairness, though, feels mostly like whining to me. That’s true even when it’s only happening in my own head.

I think it’s because at an intuitive level, the emotion feels deeply counterproductive. Also, experiencing a sense of unfairness isn’t me interacting with the universe at large, it’s me interacting with myself. The universe is mechanistic, without purpose in the human sense. There is no rule of fairness to be violated. That I have already paid great physical, financial and emotional costs for a completely preventable series of cancers that normally arrive 20+ years later than they did for me is terrible, and it’s too bad for me. But that’s not unfairness, because there was no fairness guarantee in the first place.

As for despair, that’s been the tough one lately. It’s really another facet of depression, I suppose, but my tools here are weaker than they are when facing the black dog head on. Last night I spent quite a bit of time awake in bed going over the financial situation (bad but not yet dire), my love life (satisfying but with that aching core emptiness I’ve had all this year, and serious doubts about my future), my sense of futurity (limited and fearful), and my sense of mortality (looming hard). I was just generally despairing over all those.

I think the problem I have with despair is twofold. One, it is slippery. I know how to get my hands on anger, depression and grief. Those are dark angels with whom I can wrestle. Despair is more of a knife in the back. I rarely see it coming, and I don’t know how to grab the handle and pull when it does.

The other is that it’s linked pretty clearly to my medication cycle. I think Zyprexa makes it worse, but in general chemo wears me down emotionally and mentally. This past weekend was my 19th chemotherapy session 19 months (coincidentally enough). FOLFIRI, which is what I’m on now, doesn’t impair me cognitively as much as does FOLFOX, last year’s chemo regimen, but it does overwhelm me more physically. Somehow that physical drop ties into despair.

I’ve said before that cancer is a social disease. It affects the patient and everyone around them. It’s also an emotional disease, like all chronic illnesses must be. I have friends, family, loved ones, a good therapist, good physicians and nurses. I am taking care of myself. But at the bottom, it is still me making this journey alone into a darkness that I sometimes have trouble seeing anything at the other end of.

Originally published at jlake.com. You can comment here or there.

Post A Comment | 16 Comments | | Link






mlerules: eyeball
User: mlerules
Date: 2011-10-03 16:11 (UTC)
Subject: (no subject)
Keyword:eyeball
Yeah, despair's a right b!tch.
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torreybird
User: torreybird
Date: 2011-10-03 16:28 (UTC)
Subject: (no subject)
I think unfairness is related to the intellect trying to tie cause to effect. When there's no correlation, it drives us nuts: there's no direct cause to blame, there is no reason for the badness, so it's unfair.

Whatever the reason for the emotion, most of us humans don't get far past an emotion by denying the expression of the emotion. Me, I tried this with anger and with unfairness. I finally cottoned onto the idea that maybe, to deal with anger, I should spend some time being angry. I still suck at it, though writing helps.

I'm better at anger than unfairness. I haven't figured out how to express unfairness that doesn't feel like cheesing out, whining, or just "being a wimp." Also, I deeply loathe the waste of time and energy it represents. But I think that denying it - while a temporary fix - is a bigger waste, in the long run.
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Jay Lake
User: jaylake
Date: 2011-10-03 16:44 (UTC)
Subject: (no subject)
I don't deny it, I just don't let it in and roll around in it. Which may be a distinction without a difference, I don't know. It just seems like 'unfairness' doesn't serve any constructive purpose in my life, whereas I can see the value (albeit sometimes negative) in the other difficult emotions.
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torreybird
User: torreybird
Date: 2011-10-04 01:08 (UTC)
Subject: thank you
I'm going to think about this a lot more.

I have a two-week-old outline for a novel, in which the MC's supernatural job is to make life tough for people who can handle it, and thereby make those people better/stronger/more purely themselves.

The plot is one of redemption, where the MC has burned out on the job whole job of making unfair events happen, so that the person will somehow, in the future, benefit. Unfairness is used as a tool - both the realities of it, and the people's emotional response that pushes them farther.

Thank you for the cogitation meat to chew.
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Jay Lake
User: jaylake
Date: 2011-10-04 01:19 (UTC)
Subject: Re: thank you
Well, you are welcome, and good luck.
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russ: zen
User: goulo
Date: 2011-10-04 07:32 (UTC)
Subject: (no subject)
Keyword:zen
Perhaps the value of despair about the unfairness consists in causing philosophical pondering about fairness and the impartial universe and "the cold equations" and so on, something which we don't normally think about so much.

I mean, as long as we are looking for whatever benefits might exist in these various painful emotions (a legitimate and useful thing to look for, to be sure!)...
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fledgist
User: fledgist
Date: 2011-10-04 15:54 (UTC)
Subject: (no subject)
I like that. It's true. It isn't a matter of "fair" or "unfair", it is just an unfortunate rolling of the dice by fortune. It would be nice if it had been a hitherto unknown uncle leaving you a couple of million instead, but you have to deal with what you get.
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Kari Sperring
User: la_marquise_de_
Date: 2011-10-03 18:30 (UTC)
Subject: (no subject)
Despair is the 4 a.m. visitor, the one who always knows when we're at our weakest and lowest, the one who can always find the sorest points to press, the bitterest memories to resurrect, the old hidden things we hide. It's the cad, the cheat, the quisling of emotions, made of old rage and the long-internalised old cruelties of friends and foes, families and strangers. It's Ged's black shape, that pursued him, and all the furies that have run after us through time. It wants to reduce us to its own bounds and cut us back to its own inadequate ideas. And it's so very hard to fight, particularly as it picks its moments so very very unkindly.
Which is why it is always okay to scream at it and slam the door on its creeping tendrils, to throw rocks and chant mantras, to act-out and demand it goes away. Like all traitors, like all bullies, it loves to sneak and hates to be viewed head-on and it always wants to be in the shadows.
We are out here to yell at it on your behalf, to say, over and over, that you are a terrific person, that that 4 a.m. voice lies and always predicts the worst.

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Jay Lake
User: jaylake
Date: 2011-10-03 21:11 (UTC)
Subject: (no subject)
Thank you.
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jakobdrud: Cloverfield
User: jakobdrud
Date: 2011-10-03 19:15 (UTC)
Subject: (no subject)
Keyword:Cloverfield
When I am hit by despair--most often in the morning--my best remedy is to change the scene. Go for a walk, take a shower, or sometimes just go to another room. Sometimes I manage to leave the despair behind, because I'm suddenly focusing on doing something or seeing something else. I don't pretend it's a miracle cure, but I thought I'd share it anyway.
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Jay Lake
User: jaylake
Date: 2011-10-03 21:11 (UTC)
Subject: (no subject)
Unfortunately, despair most often finds me in late periods of sleeplessness, where changing the scene isn't really much of an option. I suppose that is because if it comes on me awake and aware, I do fundamentally what you describe without necessarily realizing it.
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amphigori
User: amphigori
Date: 2011-10-03 22:18 (UTC)
Subject: (no subject)
Firstly, I think all your emotional responses are absolutely valid, even if unwanted, even if there's no obvious purpose. Despair (and unfairness) are awful beasts to wrangle with - especially when they come ninja-styles in the small hours of the morning.

I wish you peace in those dark hours and hope you can find a way to settle the mind-chatter.
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(no subject) - (Anonymous)
Jay Lake
User: jaylake
Date: 2011-10-04 18:07 (UTC)
Subject: (no subject)
I like your rule, but, dang that's a hard voice to quiet when it comes on in times of dark exhaustion.

Also, seeking a bit of clarity, I'm a big believer in increasing fairness in the universe. This is a situation where there isn't really a question of fairness in a social justice or allocation of resources sense. Rather, my sense of unfairness seems to fall firmly in the 'why me' type of whingeing. I can't make this seemingly endless journey through cancer more fair for me or anyone else by raising my consciousness or modifying my behavior.

And there I go, whining again.
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That Which Fights Entropy: nowhere
User: amberite
Date: 2011-10-05 05:35 (UTC)
Subject: (no subject)
Keyword:nowhere
I can't make this seemingly endless journey through cancer more fair for me or anyone else by raising my consciousness or modifying my behavior.

Ahh, but that's not true. The essential fact of it - that you have cancer - doesn't get any more fair, but the way you're handling it, sharing your thoughts and feelings with the world at large, going to therapy with your daughter, and the rest, means that overall you are lightening the burden on others.

I can't answer the question of whether you are lightening the burden for yourself by these things, and I suspect that because the way you respond to life is your natural style, there isn't much of an "either/or" about it for you. You're not and would never have been the grim, laconic fifties dad who hides the pain (and unconsciously inflicts it on everyone else.) But - you've said that others have written you to thank you for your frank blogging on the topic. (And the impact of your openness and your shared thoughts benefits all of us, I think, not just those who have cancer; but I guess that's another way of restating the mission statement of Writing In General (tm).)

So - no, you can't make it more fair than if you'd never had cancer; but you can make things fairer for other people who have cancer, by being the voice you are, and for your family by processing your emotions in the open and helping/encouraging them to do likewise, and for the world at large. I, too, am a believer in increasing fairness in the universe, and I believe that one of the greatest ways a person can do that is by speaking out.

Maybe we can't, ultimately, function as effectively as allies to you as you are to us, and that really sucks.

But never believe you are not helping anyone.
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Jay Lake
User: jaylake
Date: 2011-10-05 19:36 (UTC)
Subject: (no subject)
Thank you for the thoughtful response. No, I'm not grim and laconic, but my friends and family are very important to me in this journey ever deeper through illness. You do function effectively, both the general you and the specific you.
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That Which Fights Entropy: me with scarf
User: amberite
Date: 2011-10-05 05:50 (UTC)
Subject: (no subject)
Keyword:me with scarf
I think it's very easy for physical fragility to be disheartening on a deep level.

Living in the mind, we forget how locked into our bodies we are, until our bodies stop obeying us, and - the kicker - forget it almost instantly again as soon as they start.

I've been thinking about that today; I think the latter is the reason I haven't succeeded yet in seeking medical care for my migraines. I've made a few attempts, but none of them has really panned out: it's "referral to this, try that" and waiting games and therapies that seem like voodoo, and I don't stick with the program when I'm feeling better. Because, why should I? I'm feeling fine, right?

And the flip side of it is that when I have an incapacitating migraine, it feels like it will be that way forever and nothing/no one will ever help me. Mind you, migraines almost certainly won't kill me, but I fear permanently losing my ability to work. Nobody really knows what the odds of that are; I try to tell myself they're small, but I could be lying. I'd also be lying if I said I had never thought of suicide because of it. They're small thoughts and I kick them out quickly.

I hope this doesn't sound like me whining. I mention my experiences in part to apologize for being out of touch this last week and in part to give personal background for a general observation - I think we have this very strong cultural tendency to "cut the head off the body" and expect that they somehow operate independently of each other, and I think that's bunkum. Both in the sense that science has made it clear that psychiatric disorders as physiological as any other disorders, but many people are stoutly ignoring that; and in the sense that problems of the body, things which cause pain and discomfort and malfunction, send distress signals to the brain that of course are going to disrupt the usual abstract and rarefied environment of human thought.

It is, as many things, entirely natural.

Being natural doesn't make it good, or fair. But it means that it is a thing that happens to people, like the rest of the bodily functions that we also, as a culture, like to pretend don't happen, or tend to blame people for, or whatever. It means that our minds must unavoidably deal with our bodies and all of their consequentialities; that we must regard emotions as entirely real and accept that they are there before we can move through them, and moving "through" them doesn't necessarily make it easy to move "out of" them right away. (Why am I thinking of the pool of tears from Alice in Wonderland?)

I'm telling you things you already know, of course. Take it as cheerleading, if you will.

Congrats on being more than half through the 12 sessions.
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