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[cancer|culture] Employment and me and the American obsession with work

Interesting article here about American’s relationship to work, specifically in light of some of the recent Republican bitching about Obamacare and jobs. As if introducing broader economic choices and more personal freedom by eliminating healthcare-driven job lock and marriage lock were somehow a bad thing.

The article says:

You heard echoes of America’s Puritan roots in Republicans’ latest argument against Obamacare: Work is a irreducible part of who we are and anything that shifts incentives away from work is a step toward indolence and sloth. We might be a more secular nation in the 21st century, but we still generally establish our self-identity through our occupation, experts say. The Protestant work ethic prevails.

Speaking as someone who is no longer working, but living off SSDI and private disability insurance, um, yeah. This issue bothers me a lot. My basic cultural wiring is just as embedded in the poisonous cesspool of Calvinism as the rest of America. I was raised with a Southern-tinged Protestant tilt. I know in my bones that worldly success means God’s favor, that illness and poverty mean that one has failed morally. This is how our culture behaves, to our everlasting shame.

So now, being on disability as I am, I’m no longer working in the usual sense of the term. Being a cancer patient is certainly a full time job, but it doesn’t embrace what conservatives call “the dignity of work”. (Which, by the way, is something I think they do get right — there is a dignity in purposeful work. Where I diverge from my conservative friends is in the definitions and implications inherent in that phrase. The core idea I don’t have a problem with.) I can’t work, even if I wanted to. Yesterday’s lunchtime trip into DC underscored how shallow my physical and mental reserves really are. That’s why I’m on disability.

We as a society harshly judge people who don’t work (excepting of course the idle rich). Who are perceived to lack ambition or ability. Where does that leave me? I worked hard all my life, did pretty well financially and professionally, and now drowning in the seas of cancer at the twilight of my days, am sidelined.

Sometimes that bothers me intensely. I miss both the job I had — I enjoyed my profession and my workplace and my coworkers — and I miss being that kind of busy. I miss writing for part of my living. I miss being focused and economically productive. I am not poor, even now, but I am certainly ill. About as ill as one can be without actually being dead.

It’s not a sense of failure. More like something at the intersection of shame, regret and frustration. I wish I could retool my mental landscape and see this time of being on disability benefits as my version of honorable retirement, or as my compensation for the job of being a cancer patient and standing witness to the disease for myself and others. Maybe I’ll succeed in that yet. But so far there’s too much of that American Calvinism in me to just let go.

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[personal|dreams] Die Traumdeutung

It’s 13 degrees outside, with a windchill below zero, and snowing merrily. Supposed to accumulate two to four inches today here in Omaha. Luckily I am flying tomorrow, which is supposed to be clear and calm, though still colder than Dorgau’s hindmost paps.

Low-key day today after yesterday’s roaming about the wilds of southwestern Iowa. I think we’re catching a movie this afternoon, and an early dinner. Another friend may pop by the hotel to visit a little while this evening, weather and schedule permitting.

Last night I had, as usual, complex dreams. The part where my house was flooding to the window sashes in clear, warm water wasn’t hard to understand. My bladder has a sharp voice in my nighttime wanderings. The part where Zachary Quinto leapt out of a wrecked VW bus to attack me with a badminton racquet was a little harder to interpret, but I went with it. After fighting Mr. Quinto off, of course.

That last part is odd. While I often dream about real people, either directly or in the form of a dream avatar, I quite rarely dream about people I do not actually know personally.

I’ve spent time with the folks from my prior Day Jobbe. That was good but also sobering. I went on disability there just shortly after my tenth anniversary of service. That makes the Day Jobbe my longest-tenured employment in 26 years of working professionally across three related industries, by a fairly substantial margin. A big part of my life. It was work I enjoyed, with people I (mostly) liked, in a field where, while I wasn’t exactly working for the betterment of mankind, neither was I helping make anyone’s life worse. It was also work which enabled me to have a writing career through a good work-life balance and a decent paycheck. And, later it on, it was work of a sort that allowed me to segue into the deeper phases of my illness without an abrupt economic disruption, both through disability-friendly management and workplace policies, as well as a very good benefits package that turned out to make a critical difference in my life in at least three different ways.

So a lot to reflect on here in Omaha. Plus, well, Zachary Quinto. And snow.

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[personal] In Omaha, various reflections, an open dinner of sorts

I’m in Omaha, where it is currently 10 degrees outside. Because reasons.

Due to travel (which went fairly well, minus a few bobbles) I did not get to sleep until a little after midnight last night. Even allowing for the two-hour time difference between Pacific and Central, this is staggeringly late for me. It is probably no coincidence that I slept solidly for nine and a half hours.

The downside of that is due to a lunch date with a friend, my morning has been very rushed and out of sorts, where I’d expected to move slow and fly low today. Hence also the late blogging.

The Omaha Beach Party meets tonight at 6 pm at Zio’s on Dodge. If you’re within striking distance of Omaha and would like to see me, feel free to drop by. It will be a bunch of writers and friends eating pizza and yakking for a couple of hours.

Meanwhile, being here is bringing a bunch of my mortality thoughts hurtling back to the surface. I’ve spent the years from 1999 to 2013 working jobs either based in Omaha or with a strong connection to Omaha. I’ve visited this city at least a hundred times, literally so — that’s not hyperbole, that’s 8-14 trips a year across most of those 14 years. Omaha represents one of this big parts of my life that has already sloughed away in the face of cancer’s mortal decline.

Still, weather and ruminations notwithstanding, I am happy to be here. I will see my old work friends, and spend the weekend with some of my dearest friends in the world. That is a goodness.

Back to Portland on Monday, and a medical appointment on Tuesday regarding one of my possible avenues for a clinical trial. No rest for the weary. (Well, except that long night’s sleep.)

See some, all or none of you tonight.

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[personal] Busy, busy

You know it’s been a tough couple of weeks when a transcontinental flight followed by a 180-mile nighttime automobile drive seems like a relaxing day.

For example, on Monday I did the following, roughly in this order:

  • Oncology consult to discuss the new scan results
  • Bank deposit and pick up held packages on the way back from the clinic (yes, on Veteran’s Day, thanks to ATMs and a friendly business that does my receiving)
  • Sort out birthday presents for the family party I am missing this coming weekend due to being out of town
  • Clear a substantial email backlog from Orycon weekend
  • Telephone meeting with financial planner
  • Multiple followup calls and emails to meeting
  • Review documents and email responses to estate planning attorney
  • Pack for return trip to Maryland to help Lisa Costello settle her parents’ affairs there
  • Telephone meeting with disability attorney
  • Fill out additional forms for disability carrier
  • Followup call and email to disability carrier
  • Photo shoot for John Picacio art project
  • Therapist appointment

That’s what my life is like these days. While I am sick and unfocused and on long term disability because I can no longer work. So, yeah.

On the plus side, our long drive last night was so we could spend part of the day in Rehoboth Beach, Delaware, one of Lisa’s favorite old haunts. A little time to relax before we jump into the logistics of dismantling her parents’ lives here.

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[links] Link salad knows that love is just a kiss away

Reading: METAtropolis: Green Space — A reader reacts positively to my novella, “Rock of Ages”.

Love, The Weak and FragileLove, to me, is like an emaciated refugee that shows up at your door in the middle of the night during a storm. You’re not sure how she had the strength to get here, but here she is regardless, her thumb on your doorbell until you let her in. (Via [info]rekre8.)

A Girl and Her Room: Portraits of Teenage Girls’ Inner Worlds Through Their Bedroom Interiors — (Thanks to Lisa Costello.)

The Acrobat Sublime — Some gorgeous photos of acrobats in unusual settings. NSFW in a very arty way. (Via [info]martang.)

Around 50% of people can ‘see in the dark,’ study shows

What is the craziest thing you have ever said to your boss, with or without getting fired? — (Via David Goldman.)

East Meets West: An Infographic PortraitGerman punctuality, Western ego and how to stand in line like a Chinese. (Thanks to Lisa Costello.)

I Noticed This Tiny Thing On Google Maps. And When I Zoomed In… Well, Nothing Could Prepare Me. — Wow. This is amazing, intense, and sad. (Thanks to [info]willyumtx.)

Telescopes as Time Machines — This has been obvious to me since I was a kid, and I’m pretty sure is clear enough to most SF readers and fans. It’s still a cool topic.

GOP Deeply Divided Over Climate Change — Polling about climate change is like polling about gravity. You can hold any ideology you want, but in the reality-based world shit still falls down.

More Passengers Are Trying To Board Planes With GunsThe most common explanation passengers give officers when they get caught is, “I forgot it was there.” Man, I feel so much safer when responsible citizens exercise their Second Amendment rights. So do the 30,000 people killed every year in this country by firearms, I’m just certain of it.

?otD: Gimme shelter?


11/4/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 9.5 hours (solid)
Body movement: n/a (traveling)
Weight: n/a (traveling)
Number of FEMA troops on my block forcing children to learn critical thinking skills: 0
Currently reading: n/a (chemo brain)

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[culture|politics] Solutions designed by people who never have to use them

Lisa Costello and I were talking (again) recently about the concept of solutions designed by people who never have to use them. My favorite example for elucidating this concept is what happened to me when my former Day Jobbe employer was acquired by a much larger entity about five or six years ago.

I was being oriented on the new expense reporting system. This was a Web-based Oracle application, and had all the usual features of any expense reporting system. But it also required a great deal of input for accountability. Division code, project code, etc. This without even respect to whether or not an expense was client billable. There were weird lacunae in the feature set that didn’t correspond to how anyone traveling on an expense account actually spends money. And so forth. The result was a horribly clumsy and slow expense reporting system which to my long time analyst’s eye had clearly been designed to meet the requirements of the Legal department with respect to liability and discovery defense. It was a total pain in the ass that absolutely prioritized corporate risk management above functionality.

I finally said to the trainer, “Do any of the senior executives of the company ever have to use this system?” They looked embarrassed and said, “No, they all have admins to do it for them.” My response was, “If our CEO ever has file an expense report himself, we’ll have a new system the next day.”

Life is full of systems like that. Airline check-in processes, for example, are obviously designed to optimize for cost-of-labor, explicitly at the expense of efficiency, usability or the customer experience. Likewise most call centers and help desks. And likewise the entire apparatus of disability management in this country.

I’ve said many times before that our disability system is onerous and punitive, designed with the primary assumption that anyone making a claim is attempting to defraud. It treats people accordingly, and requires all sorts of entirely pointless paperwork and compliance steps from people in their hour of deepest need and least capability. These systems were designed with profit margins, preservation of capital, and fraud management as primary priorities. They were not designed by anyone concerned with helping the poor or disabled, and they certainly were not designed by anyone who ever for a single moment thought they, themselves might fall under the rules being put in place.

So with the ACA. I’m not talking about the issues with healthcare.gov, which are a topic of their own, but the whole clumsy mess built to accomplish a social goal which could have been accomplished much more cheaply and simply through Medicare eligibility expansion. (Among other routes.) All those hundreds of Republican amendments to the law are there to gum up the works, punish sick people for being sick, and poor people for being poor. That’s not what conservatives call it, of course — they have plenty of high minded rhetoric about resource management and audit and reducing dependency — but those are just lies Republicans tell themselves so they can sleep at night in the false belief they are doing the right thing.

But whether you’re talking about the basic Heritage Foundation template of the ACA, the framework written by the Obama administration and Congressional Democrats, or the thousand little land mines planted by the GOP, none of those pieces were designed by people who ever expected to use the system personally.

And thus we have the hot mess ACA we have today. My old employer’s corporate expense reporting mess writ large across the landscape of American society. And for the same reasons. Because the nominal purpose of the project is badly misaligned with the priorities of the people who designed it.

None of the solutions I see to the problems with the disability system or the ACA will ever come to pass. Forcing Congressional Republicans to take themselves and their families solely to public clinics for year is impossible. Privilege protects its own. And asking for empathy is a fool’s errand with modern conservatives, who seem to view empathy as weakness, even a sinful betrayal of principle. At best, a foolish form of compromise.

So, yeah. Solutions designed by people who don’t use them dominate our lives in ways small and great. Enjoy…

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[cancer|personal] Another change of status

As of today, I am no longer employed. Instead I am now on Long Term Disability.

For the past ninety days since I stopped working, I’ve still been employed, but on Short Term Disability leave. Today is my transition date. Much as I never expect to write again, I never expect to go back to work again. Not with my terminal diagnosis and the difficulties of my treatments.

I had my first job at 15. I was working full time by the second half of my college years. Except for periods of involuntary unemployment, I’ve never not worked.

Now I am being given the luxury of dying in peace rather than dying in harness.

Sometimes I think about what it would mean to work now. There are days when I’m quite functional, after all. Then there are days when I am not. To fill a job today, I’d need an employer that could tolerate me being unable to commute to work, being unable to stand at work, being unable to walk more than short distances at work, being incredibly clumsy and malcoordinated, spending up to three hours per day or more on bathroom breaks, falling asleep at random intervals, having significant short term memory problems, not being able to count or make change accurately, being unable to remember the names of co-workers and customers, lacking deep analytical or critical thinking skills, and taking an enormous number of half days off for medical visits.

Since I’m not interested in being a congressman, there’s not a lot of other jobs that will tolerate this sort of behavior. Plus exhaustion. And emotional meltdowns. And and and…

So I no longer work. Another thing which has defined my adult life, lost to cancer.

At least I still get to do interesting and rewarding things with my time, given the limits of my capacity.

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[cancer] Writing, blogging and me

Yesterday Lisa Costello asked me a question I’ve already been asked in several other contexts. It’s also a question I actually expect to come up in an adversarial way if my disability claims are ever audited. She said, “If you can blog, why can’t you write?”

There’s a simple, not very helpful answer to that question. Blogging is just talking through my fingers, conversation at one remove. Writing is something else entirely.

We spent some time talking out more complex answers to that question. I’m going to take a crack at them here, with the proviso that I’ll probably have to come back later and try again. Because even I don’t understand this very well.

It’s been true every time I’ve been on chemotherapy that I cannot write. It’s not that my fingers can’t touch the keyboard — they’re doing that right now, clearly enough. Rather, something in my head fails.

I’ve said for years that I don’t write like I talk. What I’ve meant by that is the part of my brain which produces fiction seems to run off an entirely different version of the English language. As if I speak two languages fluently, both of them English. I’ve long wondered if fMRI studies of writers deep in first draft mode would bear this out empirically. If you think about it, the process of learning to write well is rather akin to the process of learning to speak another language well.

The objective evidence of this assertion is available in most of my published fiction. Pick up almost anything I’ve ever written and read half a dozen pages. You’ll find sentence structures, vocabulary choices, conceptual presentations and so forth that simply would not be present in spontaneous speech. Not even speech as annoyingly erudite and obscurantist as mine can sometimes be. (Or used to be, before chemo ate my brain.) I strongly suspect that some computational textual analysis on my blog corpus and my fiction corpus would suggest two different authors.

The issue isn’t putting words and sentences together, per se. Regorafenib does in fact give me mild, transient aphasia, but that’s just a bloody nuisance. I can still talk just fine, and except for the odd moments of aphasia or anomia, do not sound as if I am ill or confused. It’s what those sentence are doing that matters.

Conversation, of which I consider blogging to be a special case, tends to be largely single-threaded with a fairly clear through line. You don’t have to think deeply or terribly far ahead to function effectively. Note that my blog posts work this way. It also comes in brief chunks. A few sentences spoken at a time, or a few hundred words typed out over twenty minutes.

Fiction requires a much deeper integration of multiple aspects of story telling. Plot, character, setting, style, prosody, world building, continuity… the list goes on and on. Essentially, it’s the same “hand of cards” theory I’ve often discussed here and elsewhere: [ jlake.com | LiveJournal ].

The number of cards you need in your hand for blogging is much smaller than the number of cards you need in your hand for writing fiction.

To abuse a metaphor, in terms of my writing faculties I’ve gone from playing high stakes poker at the pro tables to playing Old Maid with the kids on the back porch. This has removed me from the Producer role I’ve played and strongly enjoyed for years, and even compromised my Consumer role in that I can no longer effectively read books, either, because I can’t keep track of that same set of complexities on the inbound side. For more discussion of this concept, see here: [ jlake.com | LiveJournal ].

The same problem applies to me working my chosen profession, from which I am now vacated on disability. I can write emails, memos and even meeting reports just fine, but I cannot handle the complexities of a hundred page business and technical requirements document, as well as the financial and legal issues inherent in drafting the associated contract.

Thanks to the cognitive impairments induced by chemotherapy and the physical and psychological stresses of terminal cancer, I can no longer do my job, either as an author or in my Day Jobbe career.

Which is to say, I cannot write. No matter how well I can still talk, I don’t have the focus, continuity, or depth to write.

And this frustrates me to the core of my soul. It’s part of the price I pay for remaining alive at this point, quite literally so. But a part of me is already gone, almost certainly beyond retrieval.

I am dying by degrees.

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[cancer] Disability insurance blues

The disability process rolls along in fairly good order. A combination of foresight, luck and social privilege on my part means I will neither starve nor go bankrupt in the process of dying of cancer (assuming nothing really weird happens to my healthcare coverage along the way). I continue to not discuss it in detail for confidentiality reasons. However, a number of issues go on bubbling below the surface, per the comments below. And yes, I am receiving advice from competent counsel as well as a financial planner and a CPA. So I’m not at sea on all this. I’m just frustrated. Meanwhile…

[info]snippy responded to my recent post about the frustrations of not working [ jlake.com | LiveJournal ] with the following comment:

It’s not right. But neither is giving a portion of the available support to people who are defrauding the system, because that portion is then unavailable to people who really need it.

Hard cases make bad laws, and one bad apple spoils the whole barrel. This is why, even though I believe it is unethical, I think we should move to a guaranteed minimum income for everyone with higher taxes on incomes over $100,000 to pay for it. No income limit on SS taxes either. (I believe it is unethical because of the negative effects on some people’s characters, but the practicality overcomes those objections-no bureaucracy, no verification requirements, those things save money that then goes into the fund for minimum income distribution.)

To which I made a further response which I wanted to kick up to its own blog post here.

Except in my case, I’m not defrauding.

My private LTD policy was an employer sponsored benefit for which I paid the premiums out of my own pocket post tax. Its entire purpose was to provide partial income replacement should I become disabled working that job. Assuming the policy is actuarially sound (which isn’t my problem either way), the premiums I paid fully offset the cost of the benefit I am now claiming.

However, if I receive any other disability income (such as SSDI), my LTD carrier deducts value of those payments from my benefit.

This is exactly the same as if I paid for a $20,000 life insurance policy and a $10,000 life insurance policy, but the carrier for the $20,000 policy only paid me $10,000 because I had the other policy also in place. How is this not flatly stealing from me? (Well, I know how, because this is how disability law is written. But it’s written to flatly steal from people in my position.)

Furthermore, the LTD benefit is tax-free to me because of the way my premiums are structured. The SSDI benefit is taxable. I have just replaced a goodly portion of the LTD benefit with my SSDI benefit, and that dollar-for-dollar replacement is now subject to tax. Again, I flatly lose. Why?

Finally, the LTD benefit is specifically built around my statutory employment, designed to replace that income, again in a presumably actuarially sound manner. How is it relevant that I might have other income such as royalties from writing reprints, given I paid premiums for partial replacement of that specific income stream, into a policy designed for that purpose?

A similar set of issues pertains to the SSDI award itself, including the question of whether royalty income from work performed prior to the date of disability is considered offsetting income. One portion of the SSA rules says this is not, another portion says it is. They are flatly contradictory on the letter of the rule. What the heck am I supposed to do with this? Any fraud examiner looking at my case could choose either interpretation as it pleased them. I’m pretty sure SSA will always choose the interpretation that allows them a clawback.

I’m not defrauding anyone. I’m in a complex situation where even asking the questions could trigger a fraud audit, costing me a great deal of time and money to defend myself. It’s very, very frustrating.

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[cancer|personal] The frustrations of not working

I’m on Short Term Disability now. I’ve been approved for SSDI, and my Long Term Disability (LTD) claim is being processed. I don’t work at the Day Jobbe any more, and I don’t expect to ever be employed again.

I have terminal cancer. That’s my most basic disability: I’m dying. Beyond that, I can barely drive for a commute. My fatigue levels are high, my concentration is poor, my cognitive abilities are eroding (though I’m still pretty high functioning, mostly because of my very strong starting point), I spend hours in the bathroom most days, I can’t stand for very long and have trouble walking. A lot of this is connected to why I don’t write fiction any more, either. Bits of my mind and brain are shut off. Probably permanently.

So, yeah.

There’s another angle here. The disability rules for both SSDI and my LTD carrier are very strict about my not working. The Social Security Administration uses the phrase “Substantial Gainful Activity” (SGA) to describe this, but it extends to even fairly minor things. This is all in the name of fraud prevention, but it leads to significant frustrations for me.

For example, Cover Oregon, my state’s ACA implementation process, is convening an advisory council for healthcare delivery quality metrics. They are looking for patient representatives to sit on the council. Given my experiences with healthcare, and my rather long and detailed history of looking at my healthcare experiences from my perspective as a longtime business and technical analyst, I think I could make a strong contribution on the council, at least so long as I’m functional.

I can’t apply for membership, because both the SSA and my LTD carrier might view that as evidence I’m capable of working. Two meetings a month down in Salem, plus some reading and reporting, I could probably handle. It’s not full time work or anything close to it. There’s no compensation. But it would be evidence of SGA, and would imperil my disability benefits. And while I suspect that if I were challenged over it I might eventually prevail, I do not have the time, resources or interest to be a test case. So I cannot pursue this, even though I could do a lot of public good.

Another example. I should no longer be signing literary contracts. I’m not writing any more, but I continue to have opportunities to place inventory, reprints and even collections of my published work. However, it’s very unclear if negotiating and signing a contract, and receiving income from that entirely based on work performed prior to my disability, counts as SGA or off-setting income. Common sense says not, but the SSA rules are flatly contradictory on this between two different sections. And frankly, I don’t know what my LTD carrier rules say about this. Again, I’d probably prevail on being challenged, but again, I don’t want to be a test case.

I can handle the contracts issue through my agent. I don’t write any more anyway. The State of Oregon will be able to deliver healthcare just fine without my contribution. Some aspects of my economic life will probably wind up being shifted into a trust soon.

But what I hate, hate, hate, is being constrained from making what contributions I still can, for fear of running afoul of the fraud management rules behind SSDI and LTD. Because of the overwhelming institutional fear of granting unearned benefits, I am denied a last, few constructive roles in life.

This doesn’t seem right.

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