“black lives aren’t worth much”

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“put down your binoculars, and with them, your corrosive self-pity”

What White America Fails to See. Michael Eric Dyson. New York Times. 7/7/2016.

The problem is you do not want to know anything different from what you think you know. Your knowledge of black life, of the hardships we face, yes, those we sometimes create, those we most often endure, don’t concern you much. You think we have been handed everything because we have fought your selfish insistence that the world, all of it — all its resources, all its riches, all its bounty, all its grace — should be yours first, and foremost, and if there’s anything left, why then we can have some, but only if we ask politely and behave gratefully.

So you demand the Supreme Court give you back what was taken from you: more space in college classrooms that you dominate; better access to jobs in fire departments and police forces that you control. All the while your resentment builds, and your slow hate gathers steam. Your whiteness has become a burden too heavy for you to carry, so you outsource it to a vile political figure who amplifies your most detestable private thoughts.

Whiteness is blindness. It is the wish not to see what it will not know….

You cannot know what terror we live in. You make us afraid to walk the streets, for at any moment, a blue-clad officer with a gun could swoop down on us to snatch our lives from us and say that it was because we were selling cigarettes, or compact discs, or breathing too much for your comfort, or speaking too abrasively for your taste. Or running, or standing still, or talking back, or being silent, or doing as you say, or not doing as you say fast enough.

You hold an entire population of Muslims accountable for the evil acts of a few. Yet you rarely muster the courage to put down your binoculars, and with them, your corrosive self-pity, and see what we see. You say religions and cultures breed violence stoked by the complicity of silence because peoples will not denounce the villains who act in their names.

Yet you do the same. You do not condemn these cops; to do so, you would have to condemn the culture that produced them — the same culture that produced you. Black people will continue to die at the hands of cops as long as we deny that whiteness can be more important in explaining those cops’ behavior than the dangerous circumstances they face.

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“an increased tolerance for half-baked plans”

Whatever the intentions of policy leaders, this “broken system” narrative has had some serious unintended consequences. And perhaps the most obvious of those has been an increased tolerance for half-baked plans. Generally speaking, the public has a relatively high bar for replacing something that works, particularly if there is a risk of failure, and especially when their children are concerned….

When it comes to replacing something broken, however, the bar for intervention is much lower. Doing something, even if it fails to live up to expectations, is invariably better than doing nothing. Only by doing nothing, Americans are told, can they fail. Thus, despite the fact that there is often little evidence in support of utopian schemes like “personalized online learning,” which would use software to create a custom curriculum for each student, or “value-added measures” of teachers, which would determine educator effectiveness by running student test scores through an algorithm, many people are willing to suspend disbelief. Why? Because they have been convinced that the alternative—a status quo in precipitous decline—is worse. But what if the schools aren’t in a downward spiral? What if, instead, things are slowly but steadily improving? In that light, disruption—a buzzword if ever there was one—doesn’t sound like such a great idea.

A second consequence of the “broken system” narrative is that it denigrates schools and communities. Teachers, for instance, have seemingly never been more disillusioned. Roughly half of teachers report feeling under great stress several days a week, job satisfaction is at a 25-year low, and almost a third of teachers say they are likely to leave the profession within the next five years. Parents, too, have never had less confidence in the system. According to the most recent Phi Delta Kappa/Gallup poll, roughly 80 percent of Americans give grades of “C,” “D,” or “F” to the nation’s schools—a far larger total than the 56 percent who issued those grades three decades ago. This, despite the fact that 70 percent of public school parents give their children’s current schools an “A” or a “B” rating. In other words, despite people’s positive direct experiences, the barrage of negative messaging has done serious damage to the public school brand. Consequently, many anxious parents are now competing with alarming ferocity for what they believe to be a shrinking number of “good” schools. As research indicates, they have exacerbated residential segregation in the process, intensifying racial and economic inequality.

Perhaps the most serious consequence of the “broken system” narrative is that it draws attention away from real problems that the nation has never fully addressed. The public-education system is undeniably flawed. Yet many of the deepest flaws have been deliberately cultivated. Funding inequity and racial segregation, for instance, aren’t byproducts of a system that broke. They are direct consequences of an intentional concentration of privilege. Placing the blame solely on teacher training, or the curriculum, or on the design of the high school—alleging “brokenness”—perpetuates the fiction that all schools can be made great without addressing issues of race, class, and power. This is wishful thinking at its most pernicious. [emphasis added]

Jack Schneider. America’s Not-So-Broken Education System. The Atlantic. 6/22/2016.

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Day 2713: A Little Blerd Joy

Day 2713. My bones feel sore. It hurts to breathe. My poor sleep is more drain than reprieve or recharge.

But I have Sonia Sotomayor’s dissent to light my day:

The PDF of the entire decision and dissents: Utah v Strieff.

Sotomayor’s dissent in PDF:

This case involves a suspicionless stop, one in which the officer initiated this chain of events without justification. As the Justice Department notes, supra, at 8, many innocent people are subjected to the humiliations of these unconstitutional searches. The white defendant in this case shows that anyone’s dignity can be violated in this manner. See M. Gottschalk, Caught 119–138 (2015). But it is no secret that people of color are disproportionate victims of this type of scrutiny. See M. Alexander, The New Jim Crow 95–136 (2010). For generations, black and brown parents have given their children “the talk”— instructing them never to run down the street; always keep your hands where they can be seen; do not even think of talking back to a stranger—all out of fear of how an officer with a gun will react to them. See, e.g., W. E. B. Du Bois, The Souls of Black Folk (1903); J. Baldwin, The Fire Next Time (1963); T. Coates, Between the World and Me (2015).

By legitimizing the conduct that produces this double consciousness, this case tells everyone, white and black, guilty and innocent, that an officer can verify your legal status at any time. It says that your body is subject to invasion while courts excuse the violation of your rights. It implies that you are not a citizen of a democracy but the subject of a carceral state, just waiting to be cataloged.

We must not pretend that the countless people who are routinely targeted by police are “isolated.” They are the canaries in the coal mine whose deaths, civil and literal, warn us that no one can breathe in this atmosphere. See L. Guinier & G. Torres, The Miner’s Canary 274–283 (2002). They are the ones who recognize that unlawful police stops corrode all our civil liberties and threaten all our lives. Until their voices matter too, our justice system will continue to be anything but.


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April is Spondylitis Awareness Month

I’m “lucky” enough to be “aware” all the damn time.

And it is enlightening to see how common this “rare” disease is.

What you also can do is look for ways to support those you know with spondyloarthritis, chronic pain and invisible illnesses.

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Bit(ch) 25: “seek out a pain management doctor to get your pain levels under control”

The article‘s fairly good. The focus is rheumatoid arthritis/RA, but I’m used to that. This stopped me cold:

If your rheumatologist won’t prescribe pain medications, seek out a pain management doctor to get your pain levels under control.  And find a good pain management psychologist to help you find the joy in life again.

Yes, I know this isn’t easy.  But it is the path forward.

Not easy? That’s exactly right. But not because I am weak of will or ill-informed or have given up already.

My current insurance doesn’t cover pain management. At all. Medically, pharmacologically, or psychologically. Which is far more than “isn’t easy” unless I have the disposable income to pay out of pocket which is no path forward because the money isn’t there and will not materialize because I’m determined to not be bent double by my chronic pain! [FYI: my previous insurance policies also didn’t cover pain management at all.]

And: when someone says s/he has RA, there’s a good chance the hearer will know RA can be very painful. When you say you have ankylosing spondylitis/AS, you get blankness. Apparently, the only inflammatory arthritises that are considered painful are the ones most people have heard of.

OK, let’s relent and say I have insurance that does cover pain management. The PM physicians in my area, for inflammatory arthritis and other conditions, only administer steroid shots, which can reduce [not eliminate] one source of pain for several months or a few weeks, and maybe radiofrequency ablation. No pills of any kind on any regular basis. It’s not just me either—when a doctor who does prescribe pain medications retires or leaves this area, his or her patients are stuck, and stuck hard because they will struggle to find a doctor who will prescribe the same, half or even a quarter of what the former doctor did. And may not find one.

Pain meds are not the only tool. But they can make an unbearable life bearable at times. Pain relief, not elimination, is about quality of life. My lack of quality of life from chronic pain will not stop a single person from becoming addicted to heroin or stop even my overdose/suicide.

The path isn’t here, and no amount of will on my part will change that. Especially if part of finding that path involves managing/controlling my chronic daily pain through pain management physicians or pain medications.

Day 2598.

I know joy. But not because of pain management.


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“an orgy of chaos”

Shamed, dishonoured, wading in blood and dripping with filth, thus capitalist society stands. Not as we usually see it, playing the roles of righteousness, of order, of ethics—but as a roaring beast, as an orgy of chaos, as a pestilential breath, devastating culture and humanity—so it appears in all its hideous nakedness.

The Junius Pamphlet. Rosa Luxemburg. 1916.

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Day 2559: Award-Winning AS Video

Good job but short shrift on the non-spinal symptoms and -itises.

award win AS video 2015

Ankylosing Spondylitis Video Awarded a 2015 Digital Health Award

Ankylosing Spondylitis Video: link

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Bit(ch) 24: That Is IT!!!

Yeah, I’m the fool who subscribes to what’s called the Times-Picayune | nola.com’s news feed. But this is the fucking end for me:

JAN 4 TP feedly crop

I’m used to fucked-up linking pictures with stories but I am now done.

The fuck?!?

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Day 2535: Flares, or Holy !@#$%^&* Shit, Batman!

Chronic illnesses are not necessarily linear, as in Monday is better than Friday [or worse], or 2003 was better than 2013, an up, or down, progression with logical stopping points and an endpoint. Autoimmune diseases especially are prone to fluctuations that may have nothing to do with one’s general health, self-care routines, assistive devices, medications, diet, prayer, exercise or rest. Flares happen. Period. All we chronics can do is make our way through them and try to explain to those who need to know why we are down, down, down.

But of course, when you’re in a flare, it’s hard to do anything but cope and get the very basics done. If you can. I don’t mean grocery shopping but showering, standing long enough to microwave soup and sit long enough to eat it, answering the phone, getting dressed or, fuck!, combing your damn hair.

So what is a flare? For example, ankylosing spondylitis/AS:

Data show that the main symptoms of flare are pain (100% of groups), immobility (90%), fatigue (80%), and emotional symptoms (depression, withdrawal, anger) (75%). There are 2 types of flare: (1) localized: during which the symptoms affect one area; and (2) generalized: this is a severe event including all the above symptoms and a flu-like illness (fever, sweating) with hot, burning joints, muscle spasm, and increased sensitivity. All patients experience between one and 5 localized flares per year. Fifty-five percent of groups contained patients (n = 85) who experienced a generalized flare. The main perceived triggers of flare were stress (80%) and “overdoing it” (50%). Patients reported that a flare may last anywhere from a few days to a few weeks and relief from flare can be gained by analgesic injections (including opiates) from a doctor, relaxation, sleep, and cannabis (3 individuals) [Brophy and Calin].

This exacerbation of usual chronic symptoms and/or recurrence of intermittent symptoms can be mild or extreme, having fatigue at about a level 6, dragging but still able to function some of the time, or fatigue at 10, where you cannot lift your arms off the bed, opening your eyes at all may hurt, you’re too tired to eat even if food were brought to you, and, if pain is part of your chronic condition/illness, your pain feels like…well, you know you won’t die but really, really wish you would, or at least pass out for a few minutes of oblivion, which feels like relief if you look at it slant.

“Minor” flares may not feel so “minor”–a “minor” IBD flare, for example, may mean days of nausea, diarrhea and/or constipation, bloating, and/or vomiting and feels anything but “minor.” A “major,” “generalized,” or “systemic” flare can involve every single system in your body. No food agrees with any part of your digestive tract, no position is comfortable, no pain med or amount of heat/cold gives relief, walking is painful for 3, 4 or 5+ reasons, every move hurts because of a muscle or tendon or inflammation or joint tenderness or headaches. “Minor” is a spectrum. “Major” is beyond the spectrum and is, therefore, more brutal. And they can play tag-team:

One hundred and thirty-four people were followed up for 1216 person follow-up weeks and there were 71.4 flares per 100 person-weeks. Of these, 12 were major/generalized flares and 59.4 were minor/localized flares. People who experienced at least one major/generalized flare during the study period had worse disease during flare-free periods in terms of disease activity, impaired function, self-reported night pain and iritis compared with those who did not experience any major/generalized flares during the study. Major/generalized flares lasted for an average of 2.4 weeks (S.D. 2.7), and were preceded by and followed by a minor/localized flare in 92% (55/60) of cases [Cooksey et al].

I have what I call “localized” flares. Either the costochondritis acts up or the “IBS” or my spine and SI joints or plantar fascitiis and Achilles tendonitis. And/or my wrists. Maybe the localized flare will include 2 things, but usually no more than that. It can take a few days or a week to pull out of it. Which doesn’t mean I’m free of pain/symptoms, just some of the extra pain/inconvenience eases. Maybe I’ll go to the doctor for a steroid shot or a 3-day pack of steroids, especially if it’s the costochondritis–the inflammation and swelling can make productive coughing difficult so I’m at risk for pneumonia, and it’s hard to sleep when I feel like I can’t breathe.

With a localized flare, I can still drive myself to the doctor. A systemic flare? The fatigue is so bad, my thinking so clouded, my limbs so heavy and slow, I’m afraid to drive at all, so I have to be taken to the doctor. A shot of steroids, a 5-day pack of more steroids, shot of extra anti-inflammatory, extra muscle relaxants, a few days [or longer] sticking close to bed except for restorative yoga, bathroom breaks, water, food, entertainment/distraction that I bring back to bed with me. And it will take 1, 2, 4 weeks to, not get better, but get out of the deep systemic flare and back to my usual level of misery and rotating localized flares.

The results suggest that there are differences between the people who experience major flares compared with those who do not. Patients who reported major flares had significantly higher levels of disease activity during flare-free periods than those who did not report any major flares during the study period. The average duration of major/generalized flares was 2.4 weeks….Furthermore, it is possible that those who experience major flares already have more severe underlying disease or are at risk of developing more severe disease in the future. Our study format did not allow us to comment on the pattern of these participants’ disease flares or activity in the years preceding the study period. [Cooksey et al].

My first recognizable AS flare, the one that helped get me diagnosed, went on for months. My GP says she doesn’t think I’ve pulled out of these recurring localized and systemic flares since November 2014. 13 months now.

So I’m always in some kind or degree of flare.

Oh. Joy.

Oh, I tried to forget the fibromyalgia/FM flares. Yes, those are different. A “deep systemic” flare in my definition is usually an AS + FM flare—problems above + blurry vision and/or light sensitivity [squinting behind dark sunglasses even on cloudy days], brain fog [difficulty thinking, making connections, remembering, etc.], headaches, depression [deep, dark, hard-to-move-against-gravity kind of depression], irritability [well duh], IBS, strange nervy pains and pokes and burning sensations all over, even more problems sleeping, a deeper throbbing in the pain. If my normal life feels like 6 on the 0-10 I-want-to-die scale, a localized flare pushes me to 7, 7.5, maybe 8 for a few hours or days, and a systemic flare, especially a “deep” one, starts at 9.5 and peaks at 11. Maybe 12. But if it’s that bad, I take anything I have that helps me sleep or zone out and just…wait. It’s all I can do. It’s what I do a lot of now.

Often a long-enough [whatever that means] AS flare sparks a concurrent FM flare. Or I push myself intellectually, socially, mentally and a FM flare stops me like death. And that flare sets off some localized AS flare(s).

It’s a full-time job.

Brophy, Sinead, and Andrei Calin. “Definition of disease flare in ankylosing spondylitis: the patients’ perspective.” [Abstract] The Journal of Rheumatology, 29.5 (2002): Web. Dec 2 2015. http://www.jrheum.org/content/29/5/954.abstract?ijkey=2dbf76e9ddc9639eb58ec5006eb4efe0fc861d76&keytype2=tf_ipsecsha.

Cooksey, Roxanne, Sinead Brophy, Mike B. Gravenor, Caroline J. Brooks, Claire L. Burrows, and Stefan Siebert. “Frequency and characteristics of disease flares in ankylosing spondylitis. Rheumatology, 49.5 (2009): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/49/5/929.full.

Stone, M. A.,  E. Pomeroy, A. Keat, R. Sengupta, S. Hickey, P. Dieppe, R. Gooberman-Hill, R. Mogg, J. Richardson, and R. D. Inman. “Assessment of the impact of flares in ankylosing spondylitis disease activity using the Flare Illustration.” Rheumatology, 47.8 (2008): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/47/8/1213.abstract?ijkey=1e1617a250c44b7d33b6d8e5b5c8b2bfbee55689&keytype2=tf_ipsecsha.

“Flare ups and burn out.” National Ankylosing Spondylitis Society (NASS) [UK]. December 2015: Web. Dec. 2, 2015. http://nass.co.uk/about-as/just-diagnosed/flare-ups-and-burn-out/.

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