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Lakeshore
An author of no particular popularity

Jay Lake
Date: 2011-10-21 05:49
Subject: [cancer|writing] And inexorably, ever more is stolen from me
Security: Public
Tags:books, cancer, child, health, sunspin, writing

I spent much of yesterday being angry and depressed. A whole host of frustrations are simply my daily lot here in cancerland, but this week’s been a bit extra cruel.

A couple of days ago, I posted about hitting the wall [ jlake.com | LiveJournal ]. That’s a transition point I’ve been expecting for a while, and in fact I got some extra time that I didn’t expect, to be productive on Little Dog and some other, smaller projects.

Still, hitting the wall means Sunspin is definitely sidelined until early 2012. This in turn has implications for when I can go to market, when the book might be contracted, whether I’ll have a trade book out in 2013 (2012 will see Kalimpura in print), whether I’ll have the money for an active con schedule in 2012 (probably not). In other words, I will stumble over a whole basket of career and financial consequences for not being able to get the book trimmed up and out the door this fall as originally planned. That’s been in the wind for a while, so it’s not exactly a shock, but I’m definitely disappointed, frustrated and daunted.

Then yesterday Viable Paradise and I came to a regretful parting of the ways. The workshop needs to confirm instructor availability about ten months in advance, for planning purposes. There’s at least even odds I’ll be in treatment again next year. Given my four month scan-and-hold cycle, even if I end this chemo cycle clear, I can’t firmly commit anything to anyone more than four months out. So having missed being an instructor this year due to this metastasis, I’m now out for the indefinite future. Even if I stay clean for the time being, it will be five years before I can commit to long range plans without the ever-present caveat about me possibly going back into treatment.

I am bitterly disappointed about this. Not at the VP folks, they need to run the workshop with some stability, and I’m completely on board with their reasoning. But I am disappointed with myself. Just as cancer has stolen so much from me emotionally and socially, just as cancer has stolen almost half my writing time these past two years, just as cancer has stolen my Sunspin deadlines, now cancer has stolen an instructing gig I was very excited about and highly committed to. Maybe in five years I can try again if I’m still alive, but I wanted to do it now, at this time in my life, at this point in my career.

I’ve realized that my most basic problem is that I still think of myself as a healthy person. My self-image is that of someone whose life permits him to make long-range plans and keep commitments. That hasn’t been true for over three and a half years now, but I have not internalized myself as the sick man that I very demonstrably am. That the world keeps forcefully reminding me I am by stripping me of opportunities.

In it’s way, that’s an odd form of privilege. The fact that I can even hold the illusion of being normal and healthy is a function of the way cancer works. If I had any number of other major diseases, I wouldn’t have the hope of respite to keep touching back on.

On top of that (or perhaps underneath), I’ve really lost my optimism this year. I made it through the first two cancers convinced everything was going to turn out fine. I don’t believe that any more. Not down in my bones. These days I’m pretty sure I’m going to die of this in the next few years. The things I aspire to, the things I’ve worked hard for, the things I’ve wanted to do — they’re being taken away, piece by piece.

Cancer is a fucking thief. It starts and ends with stealing the heart out of me. Along the way it steals my love life, my writing career, my daughter’s childhood and everything else it can get its bloody hands on.

Take care of yourselves. Do the preventative things you can do for your lifestyle, your genetic history, your age cohort. Trust me, you never want to go down this road.

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

Post A Comment | 29 Comments | | Link






fledgist
User: fledgist
Date: 2011-10-21 13:36 (UTC)
Subject: (no subject)
You have every right to rage against the dying of the light. I suspect that rage will keep you on this side of the grass a lot longer.

Cancer is a thief, you're absolutely correct.
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cathshaffer
User: cathshaffer
Date: 2011-10-21 14:07 (UTC)
Subject: (no subject)
Viable paradise cannot exclude you based on the possibility of you needing cancer treatment in the future. That is ILLEGAL discrimination based on disability/illness. You go back to them and tell them to put you back on the goddamn schedule or cathshaffer is showing up on their doorstep with at least six lawyers. That is not okay. (And if you are excluding yourself preemptively, stop it. If you have to go back into treatment, they can replace you, and it's not something you should worry about.)
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cathshaffer
User: cathshaffer
Date: 2011-10-21 14:14 (UTC)
Subject: (no subject)
Here's a page with a bit more about job interviews and disabilities:

http://www.eeoc.gov/facts/jobapplicant.html

Your prospective employer is not allowed to even ask you questions about whether a medical condition may prevent you from doing the job.
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Jay Lake
User: jaylake
Date: 2011-10-21 14:28 (UTC)
Subject: (no subject)
Not the way I want to play this, really. Truly. I know where they're coming from, and I can hardly force myself into a cooperative endeavor and preserve goodwill at the same time. But thank you for the sentiment.
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cathshaffer
User: cathshaffer
Date: 2011-10-21 15:21 (UTC)
Subject: (no subject)
Nobody that experiences discrimination in a workplace no matter what type (racial, sexual, etc.) then feels good about asking for their rights. I understand if you don't have the energy for it right now, but a lot of people would support you if you did. Sometimes goodwill is best restored when people are made to understand that they made a mistake and given an opportunity to fix it. Sorry if my tone was over the top, there.
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Sherwood Smith
User: sartorias
Date: 2011-10-24 15:16 (UTC)
Subject: (no subject)
VP can and will make space for Jay when his health permits. I was there, I heard the conversation, and I saw how every single person there wanted Jay's smarts and his talent on that island. I heard the praise everyone had for his work and for his writing insights. Every person, no exception.

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cathshaffer
User: cathshaffer
Date: 2011-10-24 15:45 (UTC)
Subject: (no subject)
Thanks for responding. I think VP should research the ADA and check with its own legal counsel on this subject. People of good faith and with the best intentions can still blunder into discrimination.
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Sherwood Smith
User: sartorias
Date: 2011-10-24 15:52 (UTC)
Subject: (no subject)
He's not being shut out, or fired. It's just that his name is not promised for next year. If his health is up to it, he can be there.
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cathshaffer
User: cathshaffer
Date: 2011-10-24 15:56 (UTC)
Subject: (no subject)
I'm not sure what "his name is not promised" means in terms of a position teaching at VP. However, I do know that employers are not allowed to ask an applicant about a health condition, disability, or pregnancy during the interview process, much less use it to make a hiring decision. Like I said, if you're connected with VP, please urge them to do their own research on the ADA and consult with their lawyer, because although Jay is not inclined to push back right now, he might reconsider. He has six months to file a complaint with the EEOC, and nearly a year to do so with state authorities. I hope VP can see its way through to taking a risk on Jay. It's not as if there aren't a hundred other talented, starving writers who would throw their own mothers under a bus for a paying teaching gig at the last minute, so I'm not seeing the risk for VP, here. :-)
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Sherwood Smith
User: sartorias
Date: 2011-10-24 16:10 (UTC)
Subject: (no subject)

He has not been fired, or rejected; my understanding is that he is on hiatus until his health permits him to be there. His place is there waiting for him, but VP is not promising students to be taught by Jay Lake until Jay knows he can be there.

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cathshaffer
User: cathshaffer
Date: 2011-10-24 16:14 (UTC)
Subject: (no subject)
Hm, okay. That's not the impression I got from Jay's post. It sounds to me like Jay believes he is definitely out this year, and since he can't guarantee his availability 10 months in advance at any time in the foreseeable future, he is also out in definitely. I'll step back and let ya'll talk. :-)
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Stephanie C. Leary
User: sleary
Date: 2011-10-21 14:39 (UTC)
Subject: (no subject)
*hugs*
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Tom
User: voidampersand
Date: 2011-10-21 14:43 (UTC)
Subject: (no subject)
I was thinking about how analytical and organized you are. And driven. If we are contacted by aliens that want to merge with us to communicate, but the initial communication is unsuccessful due to the extraordinary mental and physical distress, we should send you out, Mr. Ambassador. I will look forward to your reports. May they fuck your cancer, literally.
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Kari Sperring
User: la_marquise_de_
Date: 2011-10-21 14:43 (UTC)
Subject: (no subject)
I'm so very sorry. I shall be hoping that you get those pieces all back, and soon.
And, y'know, fuck cancer sideways with a brick.
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User: kshandra
Date: 2011-10-21 15:30 (UTC)
Subject: (no subject)
Keyword:Fuck Cancer
My icon covers it. I have nothing to add that is either relevant or true.
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Douglas Cohen
User: douglascohen
Date: 2011-10-21 16:08 (UTC)
Subject: (no subject)
I'm sorry, Jay. I wish there was something more I could say.
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torreybird
User: torreybird
Date: 2011-10-21 16:45 (UTC)
Subject: (no subject)
oh dear. I'm so sorry.
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shelly_rae
User: shelly_rae
Date: 2011-10-21 16:48 (UTC)
Subject: (no subject)

Dude, been there, done that, three times now. it'll get me eventually but not tomorrow, nor next week. Our ugly roommates won't leave but we can spank their butts and send them reeling. Yes, live in the now. For me that means living as if there is no tomorrow. Carpe diem dude.
Like you, cancer has stolen immensely from me. It's become part of who I am. I'll never be a mom, or a grandparent and there are days when I'm freeking jealous or even mad about it. But life won't stop for us.

When they told me, at 19, there was no cure for neuroblastoma I thought that meant an end to treatment. But it doesn't, and lookie here, I'm done with my third chemo (February) and im riding my bike to a day jobbe in the rain--because I can.

Do what you can. I know how hard that is for you. It's hard for me too. TBI stole even more from me. Memories, abilities, friends, but I'm making new ones.

It's ok to let things go, people will cut you slack. Writers have big gaps in their print history. yes, it is galling to who you are--be someone else.

Dude. People love you. You love people. Cancer cannot take that away. Nope. Just ask them.

Because you can.

Anon

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Erin
User: perimyndith
Date: 2011-10-21 17:18 (UTC)
Subject: (no subject)
Jay, I'm so sorry that cancer is taking so much from your life right now.

And I'm vastly disappointed that you are not planning to do VP next year. I am a VP alumni and love VP to death, and I know they run on much volunteer effort and a fairly small budget; but I also feel that in extraordinary circumstances, it is reasonable to provide leeway and accommodation (even if the law didn't require it). I do think that in your position I would be easily convinced to pull out--especially if the conversation started after the chemo was affecting your daily life. But I also think it's unfair to you to be asked to do so instead of being supported. The experience and knowledge you could bring to the workshop more than balances any potential inconvenience to them.
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adelheid_p
User: adelheid_p
Date: 2011-10-21 20:30 (UTC)
Subject: (no subject)
Anger is completely understandable and yes, this is a big change you did not ask for and do not want but somehow you have to find the middle line because your anger will consume you and I don't think that's the person you want to be. I hope that somehow you can find away back to some happiness even with this unwanted roommate (as some one else referred to it). *hugs*
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Karen
User: klwilliams
Date: 2011-10-21 21:07 (UTC)
Subject: (no subject)
When my best friend was slowly dying of the side effects of cancer, her major source of distress was exactly what you're saying: so many things kept being taken away from her. Yes, this really, really sucks. I strongly hope that you're healthy after this round. Me, my doctor just signed the form so I'll have a handicapped placard for my car (permanent status). God that depresses me, even though I won't need to use it very often.
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emmainfiniti
User: emmainfiniti
Date: 2011-10-21 22:16 (UTC)
Subject: (no subject)
Hugs.
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Eposia
User: eposia
Date: 2011-10-22 03:41 (UTC)
Subject: (no subject)
That's a shame. At the dinner we shared you'd halfway convinced me to go ahead and sign up for VP despite my skepticism for writing workshops overall. Assuming, of course, that MY health holds up. But I'm much less inclined to do so if you won't be one of the instructors.
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User: (Anonymous)
Date: 2011-10-22 14:58 (UTC)
Subject: Thanks
I noticed you linked to my site. I want you to know that I appreciate it. Getting visitors to my site is a small thing in light of your struggles but truly I appreciate your kindness. I wish you the geatest success as you engage in your fight for life.
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Redbendad
User: redbendad
Date: 2011-10-22 22:40 (UTC)
Subject: (no subject)
You can think of yourself as a healthy person who currently is on a health hiatus or a sick person. One is an opening. One is a closing.

You can beat yourself up if it seems right to you or you can encourage yourself for staying in the game with a few course corrections beyond your current control.

How would you treat someone else if your situation, such as your daughter? Do you deserve a harsher treatment for some reason or is kindness towards yourself called for in this case?
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Jay Lake
User: jaylake
Date: 2011-10-23 15:19 (UTC)
Subject: (no subject)
There's an intersection between the blunt reality of what I can do, or commit to, and the sense I have of myself, that I haven't quite resolved. I have these past few years refused to be the Sick Man, but my body certainly hasn't gotten the message.
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Redbendad
User: redbendad
Date: 2011-10-23 15:40 (UTC)
Subject: (no subject)
The next time you're at Powell's, check out The Lazy Man's Guide to Enlightenment by Thaddeus Golas, if you haven't already. He talks about resistance in a way that you may find useful.

You are doing a great job, an admirable job, a heroic job, of doing what you are doing. That is a freaking fact, Jack. You can run downhill. Maybe you can run on a flat surface. If you find it challenging to run uphill, to climb Everest in your underpants, to breathe underwater and such, then maybe you can be understanding and accepting. Remember to factor in the degree of difficulty when calculating the score. Breathe. Love. Live.
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