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Jay Lake
Date: 2013-10-16 06:51
Subject: [cancer] Purposeful work
Security: Public
Tags:cancer, friends, health, personal
I was having coffee with a friend last week. (Well, I was having hot chocolate, since I don't drink coffee, but he was having coffee.) As we chatted, my friend mentioned the need for purposeful work in one's life.

That's one of the biggest issues in my personal world right now. I no longer have purposeful work. My recent school visit was a glimpse of that, but no more. The Day Jobbe is behind me, and while that wasn't exactly a big philosophical focus, it fed my family and kept me interested. My writing life is aso behind me, and that was a big philosophical focus.

These days I spend my time and mental energy, such as it is — an hour or two of cognitive focus per day, at most — on the minutiae of disability insurance and health insurance and financial planning and estate planning. That tends to be endless, soul sucking, and rewarding only the very abstract.

For example, the CT scan appointment I made yesterday after my oncology appointments was posted for October, 2014. I noticed this, called back in and asked for a reschedule. The rescheduled appointment was also for October, 2014. I called back yet again, and finally got the November date the doctor had requested. I had to pay close attention to days and dates, and do multiple followups over the space of half an hour. Me, with my foggy brain and dyscalculia and everything else.

Everything is like this. Swimming in mud, trying to keep up with forms and deadlines and Byzantine procedures. Not purposeful work. Not even remotely so.

So it goes, I guess. I'm still alive. My purposeful work today is to remain alive, to survive my cancer a little longer, and to bear witness to the world of this disease and its tribulations. But that's hardly a job description, and the day-to-day reality of that is alternately finicky and exhausting.

I do less with less, and feel much less rewarded for it. Another thing cancer has stolen from me.

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Debbie N.
User: wild_irises
Date: 2013-10-16 14:59 (UTC)
Subject: (no subject)
I don't know if you can see your cancer blogging as purposeful work or not, but from the outside I can't see any way to categorize it otherwise.

This, of course, is to add to what you said, not contradict or dismiss. Losing purposeful work would be one of the hardest things for me to lose.
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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2013-10-16 16:01 (UTC)
Subject: (no subject)
Keyword:First Icon
What Deb said, precisely.

And from where I sit, the hardest thing is simply to say, I see your witness. What I want to say is, Here! I can fix this! Let me fix this! And there isn't anything I can fix; there isn't anything that can be fixed with what humans know how to fix now.

So I see your witness. I witness with you.
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Elizabeth Coleman
User: criada
Date: 2013-10-16 16:20 (UTC)
Subject: (no subject)
Like you say, you're a witness, or maybe even better, a scout. A scout moves ahead of the group, hacking a trail and leaving signs behind them. They may never return to the group, but if they didn't encounter the piranha-laden rivers, and leave behind warnings, then the group would also have to deal with the piranhas, instead of building a nice boat. (Jeez, I hope we build a boat for cancer patients.)
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User: martianmooncrab
Date: 2013-10-16 17:48 (UTC)
Subject: (no subject)
You are still Dad... and you do that 24/7.
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mlerules: Cruella
User: mlerules
Date: 2013-10-16 18:41 (UTC)
Subject: (no subject)
Hmm, you could always take up a hobby...

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User: fledgist
Date: 2013-10-16 23:32 (UTC)
Subject: At this point
Making it day by day is a huge purpose.
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User: a_cubed
Date: 2013-10-17 00:03 (UTC)
Subject: (no subject)
As others are commenting, your cancer blogging is useful. It is therefore purposeful. Particularly given the mess US healthcare funding (US healthcare when you can get it is on average mostly the same as elsewhere according to the studies I've seen - better for some things, worse for others, but the funding model is completely screwed up). You are making excellent lemonade from this basket of lemons, sir.
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Agent Mimi
User: agent_mimi
Date: 2013-10-18 02:21 (UTC)
Subject: (no subject)
I can't tell you how to feel about your blogging, of course, but it's immensely helpful and important, and a lot of people would call it purposeful without question.

You're in a really unique position, and to take advantage of it as you are is amazing, and very much appreciated.

For example, when my parents were ill, separately, I was posting to LJ regularly, but wasn't able to write anything of practical use or insightful analysis about the situation. And because of who I had hanging around me in my online LJ life at the time, I didn't get good advice, but instead, say, someone from alt.religion.kibology calling me a "whiny bitch" for ranting about mom's doctor's office messing up her appointment dates.

But you have a terrific and knowledgeable commentariat and a lot of good will from so many people, and amazing insight into what's going on, and of course the talent to write it out so well -- even if it's not the kind of writing you want to do, or maybe even the quality you're hoping for, it's very appreciated.

Like wild_irises said above, this isn't meant to contradict in the least, but give another outside perspective.
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