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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.

[links] Link salad knows there is water underground

The Choosatron: Interactive Fiction Arcade Machine — Wow, this is weirdly cool. (Via [info]garyomaha.)

A New Chapter in the Immortal Life of Henrietta LacksNIH finally invites her family to discuss the use of her extraordinary cells.

Researchers invent a new approach to assembling big structures out of LEGO-like blocks

Methane Ice Worms: Hesiocaeca methanicola Colonizing Fossil Fuel Reserves — Methane ice worms? That’s some pretty alien life right there, here on Earth. (Via Daily Idioms, Annotated.)

New Hot Zones now cover 5% of Earth; Only Fix is Halting CO2 — Nothing to see here, citizen. Move along. Just liberal lies masquerading as “facts” and “data”, as most liberal lies do.

Victor Hugo’s theory for why the rich resent the poor — Thus presaging the modern Republican party with frightening accuracy.

Oregon’s GOP Chair Wants to Sprinkle Nuclear Waste From Airplanes — Because… I don’t know. Every time I think I’ve seen the depths of conservative lunacy, something new, weirder and even more stupid comes along. In my adoptive home state, no less… (Snurched from [info]james_nicoll.)

QotD?: What happens once in a lifetime?


8/18/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.5 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 246.0
Number of FEMA troops on my block forcing conservatives to enroll in Obamacare: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg

[links] Link salad loves the halflings’ leaf

Richard Derus reviews Endurance — Another part of his Jay Lake Pre-Mortem Readathon. He seems to have liked the book.

Archaeologists Just Found the Oldest Board Game Tokens Ever — This is nifty as heck. (Via [info]threeoutside.)

Hyperactive Brain May Create “Near Death” VisionsA new study shows that even after cardiac arrest, the brain keeps on going. Light. More light.

Stem cells turned into cancer-killing immune cellsIn cases where immune therapy works, it could allow mass production of treatment.

Fossil Reveals Long-Lived Mammal Group’s SecretNew Jurassic find in China provides fresh evidence of early mammal evolution.

How to Build a Time Cloak with MirrorsA simple arrangement of switchable mirrors can create “holes in time” of almost any length.

Search for centuries-old galleon off Oregon coast begins anew near Manzanita — Arrrh, me hearties.

Scrapbook of early aeronautica (1783) — Oh, cool. (Via [info]threeoutside.)

DC-10 arrives at the Falls fire — Wow, this is a hell of a photo of a water bomber.

Tensioned Suspension — This be some cool art.

Scientist banned from revealing codes used to start luxury cars — (Snurched from Daily Idioms, Annotated.)

Earth’s inner heat helps control Greenland’s iceDifferences in the Earth’s crust create hot and cold spots under the ice.

West Antarctica Warmed Quickly … 20,000 Years AgoThe modern meltdown of the Antarctic Ice Sheet mirrors the frozen continent’s big thaw after the last ice age ended 20,000 years ago, a new study finds. Amazing, the degrees even the climate itself will go to in order to support the liberal lie of climate change.

Yep, We’re Screwed: Top Ten Recent Climate Change Findings that should Scare You — Nothing to see here, citizen. Move along.

2 Trenton police detectives shot — Thank god for the NRA and the Republican party and their absolutist defense of your Second Amendment rights. Otherwise this shooter wouldn’t have been able to exercise his theoretical defense of essential civil liberties by wounding two police officers. But these daily shootings are a small price to pay for America’s gun owners to feel safer.

Obama-Impersonating Rodeo Clown Offered Political Asylum by Congressman-Impersonating Clown Steve StockmanQuoth Stockman: “Liberals want to bronco bust dissent. But Texans value speech, even if it’s speech they don’t agree with. From Molly Ivins to Louie Gohmert and every opinion between, Texans value free and open political speech.” Apparently Representative Stockman has never met any Republicans, ever listened to Rush Limbaugh, and was not alive during the Bush administration. The idea that conservatives value free speech and dissent in any form, let alone by comparison with liberals, doesn’t event begin to make the laugh test. Not to mention failing to meet any reality-based criteria whatsoever. Dixie Chicks, anyone? More of that just famed conservative intellectual honesty and self-awareness on display.

Three Republicans Who Opposed Sandy Relief Now Demand Disaster Aid For Arizona — Because being a conservative means never having to be intellectually honest. Nuance, donchaknow?

Congressman Doesn’t Believe White Collar Crime On Wall Street ExistsAt a town hall meeting in El Dorado Hills, California on Tuesday, a constituent asked McClintock for his “stance on Wall Street criminal practices.” The congressman responded, “Well first of all, for a criminal practice there has to be a gun. It’s pretty simple.” Your Republican party, ladies and gentlemen. It’s cretins like this who have a hammerlock on the American political process.

Santorum: Term ‘Middle Class’ Is ‘Marxism Talk’ — This is so stupid I cannot even begin to comprehend it. But, hey, Republicans!

QotD?: Is your mind clouded?


8/16/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 7.0 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 246.4
Number of FEMA troops on my block forcing conservatives to enroll in Obamacare: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg

[links] Link salad walks into the fire

Open dinners in New Zealand — Wellington – Thursday, 8 August – 6 pm – The Southern Cross; Auckland – Tuesday 13 August – 6 pm – Galbraith’s Alehouse. See also the SFFANZ announcement. (Thanks to [info]khaybee.)

The Stars May Not Lie, But Why Are They So Racist? — A very snarky review of my novella. (Hint: they didn’t like it.)

‘Death With Dignity’ Difficult For Hospice Workers

Before the Stewardess, the Steward: When Flight Attendants Were Men

Inside The Genius, But Asocial Elevator’s Brain — Hah. (Via David Goldman.)

Crochetdermy, Wonderful Crocheted Taxidermy Art Sculptures — Yow! (Via Daily Idioms, Annotated.)

Issue of Sexual Consent Between Elderly Adults With Dementia Proves Problematic

How to put a human on Mars

Volunteers See Fukushima Radiation on the MoveCrowd-sourced data provides a high-res view of radiation levels in Japan.

“Stable” parts of Antarctic ice may have retreated in the pastIce in one region retreated hundreds of kilometers when CO2 was last this high. Nothing to see here citizen. Move along.

A Brown Mother’s letter to her Sons and a White Mother’s letter to her Son — Sigh.

A Religious Legacy, With Its Leftward Tilt, Is Reconsidered — There is more to religion in this country than the socially and morally toxic conservative Christianism that has come to dominate the cultural discourse.

“Finally, Real Numbers on Voter ID” — Ah, that conservative commitment to democracy. Because voter fraud is a problem which occurs on a par with death by meteor strike, and thus must be resolved by Republicans, entirely coincidentally to the detriment of an enormous number of minority voters who just happen to lean Democratic. (Via Scrivener’s Error.)

QotD?: Got any big news today?


7/24/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.75 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 250.6
Number of FEMA troops on my block conducting Department of Justice investigations of white patriots: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg

[links] Link salad jets out to San Diego

The Story Coaster — Hahahah. (Via David Goldman.)

Lakeside Backstory — More on the movie, and me, from Waterloo Productions.

Rev-e-rie – Jay Lake, Cancer, and God #4: Prevailing — My friend UMC pastor Dave Raines continues his meditations on life and death.

How Doctors Die — Yeah. Sigh. (Via Ellen Eades.)

Finding Cancer Cells in the BloodTechnologies that can pull tumor cells from patients’ blood are giving researchers an unprecedented look at cancer.

How Smart Dust Could Spy On Your BrainIntelligent dust particles embedded in the brain could form an entirely new form of brain-machine interface.

Hawkmoths zap bats with sonic blasts from their genitals — I’ve been on dates like that. (Via David Goldman.)

Design Drawing for Avanti — Oooooh.

Time-lapse video of Interstate 84 highway repaving project — (Via Lisa Costello.)

T. rex leaves tooth in would-be lunch’s tail, paleontologists find it

New Map Shows Where Nature Protects U.S. CoastCoastal habitats like reefs and marshes protect people from natural disasters—in the right locations.

Hunger Games, U.S.A.Something terrible has happened to the soul of the Republican Party. We’ve gone beyond bad economic doctrine. We’ve even gone beyond selfishness and special interests. At this point we’re talking about a state of mind that takes positive glee in inflicting further suffering on the already miserable. Conservatives have convinced themselves that there is a “culture of dependency”, and that breaking the cycle of that culture is for the public good. Deep cruelty cloaked in high minded policy is still deep cruelty.

QotD?: Going to Comic-Con?


7/16/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 6.0 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 249.6
Number of FEMA troops on my block supplying black kids with Skittles: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Leviathan Wakes by James S.A. Corey

[links] Link salad has a chrome steel heart

Hugo nominated novella: The Stars Do Not Lie, by Jay Lake — An interesting review.

Emoji Dick; — Lit-choo-a-chur!!! (Via [info]corwynofamber.)

Potosi miners’ language — For those of you interested in using argots, creoles and secret languages in your fiction, this is a must-read.

The Pixar Theory — The Grand Unified theory of Pixar movies. Weird. (Thanks to [info]scarlettina.)

The Top F2P Monetization Tricks — Some pretty deep gaming geekery here. (Via David Goldman.)

Here’s How to Wash Your Hair in Space — Because you might need to know this.

Congressman who used to be a high school English teacher irks GOP by marking their memos with a red pen — Hahahahahah. (Via Scott Frey.)

GOP House members from districts most affected by climate change cast 96% anti-climate votess residents of these often deep red districts struggle to cope with extreme temperatures, they need to know that while the science on climate change is overwhelming, their Congressional representatives are doing their best to make things even worse. It’s hard not to say those conservative voters deserve what they are getting — the deep anti-science, reality-denying bias built into the GOP will come home to roost very, very painfully — but nobody deserves what is going to happen to these people. Not even the intellectually dishonest and willfully ignorant who vote this way.

Jury finds George Zimmerman not guilty — So a white guy chases a black neighbor kid around, picks a fight, shoots his unarmed victim, then successfully pleads self-defense. Yes, this is justice all right. I am ashamed. Ta-Nehisi Coates on this. Slacktivist Fred Clark also has a round-up. This outcome may be legally correct, but it is a moral and ethical disaster.

Undocumented Immigrants In Oregon Paid About $94 Million In Taxes — This is another thing the immigration bigots on the Right never seem to understand. Undocumented immigrants pay a hell of a lot more taxes than any benefits they receive. They’re a net benefit to the economy.

QotD?: Got polish?


7/14/2013
Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.5 hours (solid)
Body movement: 0.5 hours (stationary bike)
Weight: 250.6
Number of FEMA troops on my block building mandatory gay marriage halls: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Leviathan Wakes by James S.A. Corey

[links] Link salad is an effective dentrifice when used under proper supervision

My Convention Harassment Policy Co-Sign Thread — Mr. Scalzi asserts leadership. I co-sign.

Steampunk Watch Part Sculptures by Sue Beatrice — Ooooh. [info]lillypond (a/k/a my sister) would love the tiny carousel horse. (Via [info]threeoutside.)

11 Harsh Realities About The World Of Harry PotterWe’re blowing the lid off this totalitarian regime! Once you peel back the layers of child-like wonder, it kind of sucks to be a wizard. (Snurched from Steve Buchheit.)

Pacific Ocean Floor Is a Huge Underwater Garbage Dump — Sigh. (Via David Goldman.)

GALEX decommissioned: What happens to abandoned space probes?NASA’s earth-orbiting GALEX was shut down Friday, meaning that the spacecraft will join a long line of space probes sacrificed to the universe. This is a surprisingly poignant piece. (Via David Goldman.)

Optical transistor switches states by trapping a single photonWhen switched off, the gate photon can be retrieved, too.

Leaving Las Vegas: How a tiny Chinese enclave is remaking the gambling world and Sin City

Faith-Healing Parents Denied Free Exercise of Religion in Death of Child — That’s the persecution narrative of contemporary American Christians in a nutshell. Profoundly immoral self-valorization.

Cyanide and Happiness recaps the arguments against gay marriage — They make more sense that what I read and hear in the media. Which is to say, not much at all.

How Do You Tell When a Politician is Lying? — I do not find this terribly surprising.

In Oregon, a Demand for Safety, but Not on Their Dime — This is what happens in low-revenue, low-tax jurisdictions. (Via Dad.)

NYT: IRS Scrutiny More Complicated Than Previously Thought — What do you know? Like almost every other conservative outrage, the great Obama IRS scandal turns out to be a nothingburger once the details are scrutinized objectively.

QotD?: Did you brush your teeth this morning?


7/6/2013
Writing time yesterday: 0.0 hours (vacation)
Hours slept: 6.25 hours (badly interrupted)
Body movement: 0.0 hours (away from home)
Weight: n/a (away from home)
Number of FEMA troops on my block building mandatory gay marriage halls: 0
Currently reading: Real Happiness: The Power of Meditation: A 28-Day Program by Sharon Salzberg; Snuff by Terry Pratchett