Pertinent pain data

Here’s a little gem I found while cleaning up my hard drive. It’s from early last year…

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Each year, 80,000,000 (that’s eighty million) Americans seek professional care for pain.

Combine the numbers of Americans who seek care for diabetes, heart disease, or cancer — three much sexier issues — and they still aren’t as many as those who seek care for pain.

  • Pain is the cause of 25% of all sick days.
  • 50% of those with nonmalignant pain have considered suicide.  (That puts a real crimp in a family’s earning power.)

The consequent costs of lost productivity and reduced contribution to the tax base & economic flow, the social impact with concomitant loss of productivity, etc., has never been quantified (that I know of), although it certainly exists. With that large a base, and that wide a ripple-effect, it has to run into billions of dollars per year.


Each year, we spend $100,000,000,000 (that’s one hundred billion) on the direct costs of dealing — badly, expensively, and inconclusively — with pain.

That same amount could buy:

  • More than one-fifth of Medicare’s entire 2010 budget.
  • 60% of 2010 Federal spending on long-term unemployment (to which disability is the single biggest contributing factor, and pain is the single most common factor in disability.)
  • 5 weeks of current military spending, with two wars to prosecute and unprecedented numbers of walking wounded to care for.

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I had forgotten those facts.  I was geekishly delighted to find them. But it is definitely an answer in search of a question, and in this case the question is this: why the hell are we wasting so much money, time, life and energy on handling pain so badly??

There are profound cultural and economic reasons why the present, appalling system is still in place.  I’m not rich enough to face those reasons down so I’ll leave that as an exercise in logic for the reader: follow the money.  Who profits by this system?  Who funds it?  Who benefits, and of those who benefit, exactly how do they benefit? What do they give up or pay, in order to reap those benefits? What are the benefit/drawback profiles for the many different stakeholders in this system?

Pain patients are the least important stakeholders in this system, and that doesn’t seem right to me. I realize I may be biased.

Sorting out the answers could keep you busy for awhile, but once you figure out a couple of common denominators, it starts to fall into place very easily. It’s a bit disconcerting at first, though.

The point, as far as pain control is concerned, is this: we’re studying the wrong things about it, and we’re treating it the wrong way around.  There is no conclusive success path on the present trajectory, just increasingly expensive ways of mitigating these largely failed clinical (and economic) strategies.

And that’s today’s ray of sunshine! 🙂

References:
“Chronic Pain Fact Sheet”, http://www.cssa-inc.org/Articles/Chronic_Pain.htm (journalistic summary)
“AAPM Facts and Figures on Pain” , http://www.painmed.org/patient/facts.html (cited sources include the AMA, ADA, AHA, NIH)
THOMAS (Library of Congress online)
Office of ppp, http://www.whitehouse.gov/sites/default/files/omb/budget/fy2011

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A gift to share

I had the pleasure and privilege of speaking with Dr. Adams, who (among other things) teaches clinical at UCSF Medical School. He provided me with a brilliant overview of the recent history of public health.

“Remember [the federally mandated public health targets called] Healthy People 2000 and Healthy People 2010? We missed those goals by miles. We don’t even _have_ a target program now. The next one could just be: Breathe. And I’m not too sure we could even hit that!”

He kept me spellbound for half an hour. I don’t think I got a word in edgeways, but he must have liked the quality of my listening, because he gave me this book off his shelf as a gift:

He said, “Be calm when you read it. Sit down, breathe, and take it easy.” Caveat emptor.

This doctor uses the (numerous!) expensive letters after his name for something besides paying the mortgage … He and his posse sent a copy of this book to President Obama, with a cover letter explaining the devastating consequences of a profit-driven health care system. 

They heard back from a medical advisor: the President put the book in his Presidential Library, but the advisor had to state that the for-profit industries had their influence so well laid in that, if the President breathed a word about single-payor care, it had been made clear to the White House that he would be abandoned by both sides of the aisle.

Abandoned. Completely. For standing up for the American people. The same American people who let those pikers into Capitol Hill in the first place.

You’ve been bought & sold. We all have.  Weren’t you looking? I’m not sure I was. 

The industries speak for us because we haven’t spoken up enough for ourselves. Politicians are nervous, ego-driven creatures desperate for a good image, and we’ve let the moonshiners polish their images — and their apples — while we bitch about the rent. 

The rent matters. Lots. Sadly, signing Internet petitions does not. 

Is it too late?

Well, you’re still breathing, aren’t you? So am I. Emigrated yet? Me neither. Guess it’s not too late, then. 

Be heard, unfiltered. Call. Fax. Write. Put a stamp on it. Letters matter. Phone calls matter. These represent a big hurdle in people’s minds, and politicians know it. They weight them accordingly. 
(http://www.usa.gov/usa/Contact/Elected)

Paper, three sentences, stamp and envelope are not really that hard to do … just slightly strange to think about. Try it & you’ll see what I mean. 
(http://www.usa.gov/usa/Contact/Elected)

If you have expensive letters after your name, this is an excellent way to get more mileage out of them. Your words are weighted more heavily still. 
(http://www.usa.gov/usa/Contact/Elected)

Let your politicians feel insecure about their policies, where they don’t serve you or those you care about. Let them feel watched.  Let them get nervous and worry about their hair; it means they’re procrastinating about changing their minds, even as their minds are changing. 
(http://www.usa.gov/usa/Contact/Elected)

Call. Write. Use stamps. Fax. Be seen. Be heard. Vote. And monitor voting. 

It’s surprisingly little trouble after all. 
http://www.usa.gov/usa/Contact/Elected

To find your reps and congress-critters, choose the category and plug in your zip code here: 
http://www.usa.gov/usa/Contact/Elected

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Fair Share Challenge: what taxes do for me

This budget horror-show has given us a lot to think about. The role of taxes in our country is probably the biggest, sorest issue of them all right now.
“Why should we pay taxes? That money is ours – we earned it!”I heard this from a member of the armed services who’s quite intelligent.   
Out of respect and consideration for my impassioned, but perhaps distracted, old friend, I wanted to find a non-partisan, preferably non-political way to discuss the point of taxation. So let’s simply see how that money gets used in real life.
Everything in bold-face type is heavily subsidized or completely funded by government money – local or federal, for better or worse. Do any of these tax-funded things affect you?
I take pain medicine which was funded by government grants to develop. My treatment was developed by government grantees. It keeps me alive and functional, so I can write things like this. Is that a good use of taxpayer dollars (printed at the Mint and monitored at the Federal Reserve)?
Read on and let’s all decide.
My nephews go to school by bus, when their mother can’t take them. She has just received her teaching credentials, so she will soon be working as a teacher. Their father, my brother, is a Marine. He runs a base where he supervises the training of National Reservists of the Army, Marines, and Air Force.  He recently visited a friend in the VA hospital.  All of his children were born in military hospitals.
Since they all run on a tight schedule, they use their car a lot. It uses gasoline; they used to have one that ran on diesel; the next one may be an electric hybrid. To cover short distances, they use local roads. To cover long distances, they use highways. They’re careful of road crews, and drive sensibly over bridges and through tunnels (I hope.) Me, I mostly use the bus and train.
My brother and his wife pull over to make room for fire trucks, police cars and ambulances. (Many ambulance systems have been privatized; however, they still work on the basis of city or county contracts that are funded by taxes.)
They eat on the healthy side of a normal American diet. With three growing boys in the house, they eat plenty of wheat and corn-based products, such as bread for sandwiches, cereal, pasta, and so on. They’re allowed occasional treats, including candy and soda sweetened with corn or cane sugar.  I bet they get their beef from the grocery store, so you know it was raised on soy and corn, and was probably fed antibiotics.  Those boys are pure dynamite anyway.
My dear old friend David used to work at the library. He still volunteers there. His pension keeps him in a simple but comfortable style of life. He likes to attend church, though most of his real friends are out and about on the city sidewalks.  He keeps in touch with a friend who has been in the mental hospital, and their conversations help her stay on track.
When my Dad died suddenly, I attended support groups at the local Hospice.  I used to be a nurse, working in hospitals and home care.  In the ER we took care of prison inmates when they got hurt. 
I ran out of work at one point and wound up on food stamps and welfare.  I will never forget that they kept me alive until I could find work again.  Since then, I haven’t really minded paying my fair share of taxes.  
During the last election cycle, I saw an angry woman on TV waving a sign that read, “Get your government hands off my Medicare!”  I hope she understands things better now. 
This has given me a lot to think about.  
And, fellow bloggers, here’s an invitation/challenge: how much better can you write on this theme?  How much do you really know about government support for the things you use every single day that make your life do-able?  How does this pertain to your work, paycheck, interests, family – whatever really matters?
I’d love it if you’d share links here and let me know.
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Out of the foggy night: Overmedication and abandonment issues

I was overmedicated on mixed psychoactives (in plain English, my doctors had me on too many pills for CRPS) and, at the beginning of February, I ditched most of them. The following weeks were pretty hideous in an interesting way, as my brain’s natural chemistry struggled with the messy extrication and departure of the pharmaceuticals.

It feels like washing my dirty laundry to say this, but I suspect I’m being too finicky: LOTS of people get overmedicated by well-meaning medicos who don’t talk to each other.

The pills I stopped were SSRIs and SNRIs. (I can’t remember which was which.) The upside to this class of medication is that it specifically relieves nerve pain, in addition to helping lift depression. (I wrote an article, buried in my archives, about the tiny handful of neurotransmitters, and how each one has many jobs. Serotonin, for instance, helps digest protein in the gut; dopamine mediates decisions. I’ll dig it out and post it on the Biowizardry blog.)

When you have CRPS and you’re overmedicated on neurotransmitter Reuptake Inhibitors (of whatever flavor), your brain is in the toilet and there’s no way to tell which mental blurch is due to drugs and which one is CRPS. I couldn’t always tell how well I was thinking, though I kept trying anyway. Perceiving how I felt underneath it all was like trying to determine the shape of a bomb while it’s still in the box. I was usually clear about what I remembered and what I wasn’t sure about… but just try getting anyone to believe you when they already know that your brain is not firing on all four cylinders.

There’s a lot of grey area in the grey matter, when you’re overmedicated and have CRPS.

I’m not sure how much more crap there is to clear out, but I know I’m a lot clearer about what’s going on right now. I look back on the past two years with some dismay, as I try to rebuild the relationships I dented, and (most painfully) try to understand why those who should have known better had simply abandoned me to that foggy night.

[photo credit http://www.flickr.com/photos/jfraissi/2165047274/]

But anyway.

I am remarkably clear, now, about what I remember and what is nothing but a sudden hole in my mind. I’m clear about whether I can think right now or not. I’m able to feel the brain crank up and crank down, so I can communicate to others, “I can do this!” or “Gotta stop now!” And, for the first time in years, I can get something done on some sort of schedule. Not a consistent or reliable schedule, not to any sort of clock, but just to know that I CAN do something is quite a step. I’ll take it and be thankful!

I still have CRPS. My medication is still problematic. I still have sudden, random, Swiss-cheese-like holes in my memory and cognition. BUT — and it’s a big but! — there is no grey area in my grey matter any more. I know if I know, and I know if I don’t know.

And that’s information I intend to use.

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Query: where have all the good studies gone?

I wonder why so much money gets thrown at the same basic studies over and over again. My personal hair-puller is the ones that call for subjects “with chronic CRPS, with only one affected limb.” They must be testing the same dozen people over and over and over again. Wait, they can’t, because if the subjects have chronic CRPS with only one limb affected, they’re either about to get better or much worse.

It’s all very well to keep re-proving a treatment until a level of acceptance is reached, but there are more effective and cheaper avenues — and much richer ones — that are passed by, in favor of flogging a handful of horses who are, at best, unconscious.

It has been too long since significant effort has gone into much more basic research: by and large, we’re still working with the scientific equivalent of the horse collar, when it comes to pain management — not the Ferrari. In fact, it’s unclear to me why we’re still fixated on management, when we need to think in terms of cure. Most chronic pain is needless.

If we knew more about the relevant neurochemistry and cellular metabolism, we’d be in a MUCH better position to figure out when NSAIDS, lido, shock, acupuncture, spinal cord stim, or ketamine comas will work, and when they’ll just be another doorway into hell.

Can you imagine how much money — and misery, and time — it would save to have a short list of things to try, based not on each doctor’s semi-religious leanings or equipment contracts, but based on each body’s signal framework and chemical signature?

Dreaming is free. Studies require funding. Follow the money, and unfortunately the reasons behind all this brutal silliness become clear.

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No choice but integrity

I’m a walking, talking, babbling, ceaseless argument for the fact that sexuality is not a choice. Integrity is — though that’s not my point here.

As a sometime lesbian and appalled heterosexual, I’m well aware that the combination of qualities I adore are hopelessly rare in either sex:

Men are disgusting… Women are unbearable… And sadly, as friend Lori remarked, “There is no third sex… And goats are too chatty.”

But that’s not the point either, though there’s plenty of material there — and some of it’s even original. This is about nonconsensual sexuality: the understanding that most of us don’t choose our orientation.

To what do I attribute my own unforeseen, profound internal shift?

Brain damage. Obviously.

The answers that sound less flippant are somewhat less convincing to me. However, CRPS’s extensive disruption of the endocrine system (that is, system of hormone-secreting organs) is already amply demonstrated. I think that’s it.

When I was more lesbian, and other people were being silly about that, I used to ask, “Why would I ‘choose’ to be something that has led several companies not to hire me, my own government to refuse to let me marry despite my being such a good citizen, and at least one individual to try to kill me in cold blood?”

Now, nobody gets silly about my orientation, but I ask myself the complementary questions. They are a lot more trivial, but also much more intransigent: “Why would I ‘choose’ to be relentlessly attracted to a sex as ill-mannered as chimps, as emotionally corrupt as usurers, and as stable as malaria?”

But hey, nobody’s tried to kill me for being straight; same-sex marriage is heading towards legality; and I’m unhireable for reasons that have nothing to do with my orientation. If I were less lonely and more selfless, I would take these changes as major victories. (As it is, it’s more like a no-score win.)

But, at New Year’s, I’ll toast those victories nonetheless, in the names of all my spiritual kindred who can be a bit safer, a bit freer, a bit better recognized for being good people, good spouses, and good citizens.

Hope to hear your voices, and see your glasses, raised with mine! Who knows, I might even run into my own better half in 2011. Whatever that person turns out to be.

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Julian Assange and Swedish herrings (red)

The Interpol-ation of Julian Assange, the most widely-known of the Wikileaks founders, is a thoroughgoing exercise in logical fallacies and predatory smoke-screening.

First, the fallacies…

Straw man: The sex was consensual, though it may have gotten out of hand in one case. Charges weren’t brought until the two girlfriends found out about each other. They backed and forthed about whether they wanted to press charges or not. (Whether large men in dark suits paid them furtive visits is open to debate.)

Selective memory: Sweden has a shamefully high rate of unexamined, unpursued, unprosecuted cases of true rape — that is, forced sex, nonconsensual sex, sex with minors. Why pursue this sexual “irregularity” over condom use and infidelity?

Entrapment: Why give him direct permission to leave the country, at his explicit request, then send the Rottweilers after him?

These charges are not designed to bring someone down. They’re designed to tie him up. How else were they going to keep tabs on someone who can afford to dress like that without having a fixed address?

The real harm was not done by Assange. That imputes too much leverage to a self-infatuated ho with mad hash skillz.

The U.S. was hoist by its own sloppy petard. The State Department and the Military decided to share records, without sharing precautions. Let’s look at that, shall we?

The U.S. State Department, whose core purpose is the pursuit and use of social and political information, has an educational requirement involving alphabet soup behind your name; a staggering array of tests; and a final examination for *entry-level positions* that takes days to complete. The computers are subject to high levels of security, including an inability to even accept removable media.

The U.S. Military has three things it wants to know: What’s your name? Got a pulse? All your parts attached? And some people scrape by on the third try.

The military develops some of the fiercest computer security in the world, but guess what? Removable media! Oh, and all that State Department data … accessible by anybody with technical skills. Guess what the Army and Air Force specifically teach? Technical skills, maybe?

Well done.

So here’s the setup:

Tons, masses, heaps of socio-political data …
– collected on the basis of strict secrecy
– sometimes at terrible personal risk
– on people and issues who remain viable and valuable;

Gets passed by the State Dept. …
– from graduate-prepared, carefully-selected, highly-socialized personnel
– in an environment with lojack and hijack protections in place
– with no meaningful guarantees of its continued protection;

To the U.S. Military,
– an organization with minimal entry requirements
– and a post-adolescent social environment
– staffed by technically competent personnel.

Doesn’t that seem kind of silly to you? I realize most of us are not masters-prepared, much less possessed of a law degree, but pure common sense would make that unthinkable. Wouldn’t it?

Now, as for the leaky boy …

While being accused of being gay is a common put-down these days, in the U.S. Military this accusation could lead to someone losing his job, his housing situation, his social network, and his entire career path. Feel powerless, much?

They’re isolating, freezing, and tormenting an idiot kid over the staggering, monumental idiocy of the Military implementation of secrecy AND the State Department’s lack of due diligence.

They’re hunting down and marginalizing a tired, aging hack who misjudged the value of his own charms, over his willingness to advertise that kind of collective stupidity.

There were a whole lot of much brighter, much better-educated, far better-informed people who fucked up on a simply staggering scale before Assange or that kid ever got into this.

Where are the courts martial? Where are the heads that should be rolling out the state dept. doors and down the steps — bouncing on the way?

The real damage, sadly, is to the wider world. The US has lost credibitlity and leverage on the world stage to a degree unmatched by anything since the initial invasion of Iraq. That, folks, is the real tragedy: we have demonstrated that we are poisonous even to our most important friends.

How many more will die for _this_ mistake, eh?

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B. C. E. takes on new meaning

Les was a chef before he was born. He helped with a BAADS Thanksgiving some years ago as a gesture of kindness, and found that — as he remarked to a friend helping out yesterday — “boy, these disabled people sure can cook!”

I laughed out loud, losing several points for coolness — but I regained them later with my Drunken Sweet Potatoes.

A weighty label like “disabled” sweeps everything before it. Literally, everything… before it. Most of us had full lives before we got a crippling illness or injury; we all have full lives now, even when much of that fullness has to do with how much harder simple things are.

But everything we did, or were, _before_ or _besides_ being [whatever] is still with us. Abled-bodied people rarely seem to think of that themselves: the term “disabled” makes our able-ness seem surprising.

Back in the late 1980’s, the socially-preferred term was moving from “disabled” to “handicapped”. This explanation from a kindly woman explained why: “It’s not correct to say I’m dis-abled, because I’m _able_ to do many different things. But I have to deal with added burdens to get the same things done that a normal person does, so I’m _handicapped_.”

Horses carry extra weight in a race, golfers get extra points on their score, and racers get penalties added to their times to handicap them. Though life isn’t a sport I entered with any thought of competition (and that’s where the analogy falls down), it’s true that I do carry a burden which makes it harder to complete the same tasks that anyone does.

But I can still cook one heck of a pan of Drunken Sweet Potatoes. Not everyone is, ahem, able to do that.

I’m definitely handicapped. I’m not sure I’m disabled. I can still write, and often remain coherent through a whole paragraph. That’s an ability!

B. C. E. — in my case, that means Before Crippling Event — I could play the flute pretty well, too. I can’t even hold the darn thing for more than a few seconds, now; the handicap there is too great to overcome.

Sadly, it’s still true that — whatever we call it — this is a nasty, harsh reality which everyone handles poorly sooner or later; the terms will continue to revolve as we try to keep from getting too stuck in our collective thinking.

As the next decade turns, I expect the terminology to change again. And then again a decade after that. And again and again, as people age and grow and try to loosen up their thinking. Rock on, I say! — We could all use a little more change.

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Housing crisis? Really?

More and more in the news about the feculent mess our mortgage system
is in. Housing is too costly & too scarce. Empty houses are hanging
very heavy on bankers’ hands. Office buildings stand vacant for years.
Oh dear.

Hmm.. How about making those vacant spaces available to the homeless?
In return for a little maintenance & hygeine, plus paying for whatever
water & electricity they use, you could have a huge impact on the most
vulnerable poor. Think of all the women, kids, even men who could get
enough peace, safety and stability to get back on their feet & back
into the economic life.

You could also keep empty homes from turning into eyesores. I know
quite a few squatters in organized squats, some of them there with the
owners’ knowledge, and they have had a significant effect on one or
two rotting neighborhoods because they simply won’t let their squat
rot, and they won’t let the real trash take over. It definitely keeps
the tone from getting worse & it keeps the drugs & violence down. I
guess squatters can be kinda scary — they are sure protective of
their squats.

When the place becomes rented or sold, they have to move, but should
get 30 days’ notice. Seems fair in return for how much money & trouble
they’ve saved!

A landowning friend of mine said squatters moved in, crapped on the
new carpet, tore up the repainted walls, and so forth. In my ideal
world, those squatters would be blacklisted & left to homeless
shelters. Squatters who decide to use your space should have basic
standards, and if they have some living-security in exchange,
should be ready & willing to take basic care of the place. Not that
you won’t want to bring in cleaners afterwards, but that costs
much less than re-refitting the whole interior!

In Egypt, they had boabs (two syllables: bo-ab) who lived in building
sites or abandoned residences to keep things from falling apart & keep
thieves and scavengers away. They weren’t paid much but they got free
rent. (Had some living across the street in a half-demolished house
that was tied up in litigation; nice neighbors, helped me with my
Arabic.) Since they were one step away from being on the streets, they
knew the underground and would let the neighbors know if there were
thieves in the neighborhood, if rabies had shown up in the area, or if
the Army was going to come around shooting loose dogs (their idea of
rabies control.)

Makes a lot of sense to me. So the rich neighborhood had a blue-collar
family in their midst — they made us all a little more comfortable,
overall. I’d love to have a “boab community” here!

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My contribution to the statistics

Here’s an anecdote to chill the blood.

On my 21st birthday (1987, so imagine the hair, shoulderpads & pegged
jeans), I went out with a mixed group of women friends — girly-girls,
tomboys, jocks; up & down the Kinsey scale.

After closing down the bar, we were talking over where to go to
continue the party. A drunk guy got thrown out of a car that pulled
over nearby. He eyeballed us — kissy noises, “mm-mmh!”, etc.; saw the
“oh f*ck off, you pathetic turd” implied by the way we closed him out;
then suddenly noticed we had no men with us.

That was a problem. Didn’t matter what we were, a bunch of women out
alone had to be evil bitches, or worse — lesbians. Verbal ugliness
ensued. It was disgusting.

One girl thought 2 years of karate lessons made it ok to give him the
fight he was looking for. She put up her dukes, moved him out into the
street, and they started in.

He was a shitty fighter, and drunk. But then something happened. He
went at her with an upraised fist, and another woman grabbed her from
behind and pulled her back — by the arms. WTF?

Somehow, in the midst of a sudden stillness, I got between parked
cars, moved into the street, and stationed myself between him and my
helpless cohort, in the time it took him to take 1.5 steps. I felt his
arm touch my upraised forearm, saw his face melt in shock… And
suddenly the sound came back on.

Behind me, the arm-grabber was screaming, “He’s got a knife! He’s got
a knife!”

Shyt-head and I took a careful step back from each other. Then
another. Then I took one more, turned and ran back to the bar,
screaming about a man with a knife — not realizing that my face was
pouring blood, flying behind me in drops and strings, drenching my
clothes, squishing in my shoe.

Drama, blanched faces, people frozen by shock — but behind my back,
two cute chubby poofters pulled themselves together, ran that crazy
sumbitch down and, unarmed but relentless, kept him penned up in a
dead end until the cops came by. (I’m told it takes balls to be a
queen. I agree.)

My testimony put him away. He was about to go free, even though this
was at least his 3rd such attack, until the judge asked if I had
anything to say. Once I finished, there was a long silence. The judge
sent him down.

He was out by my next birthday.

Let me reiterate: it didn’t matter who we were. He truly believed anti-
gay speech was a justification for murder.

It doesn’t matter who you are. It’s your issue, too. Nobody is immune
to the effects of hatred. Nobody is unkillable.

*The only way to make your world safer is to make hatred less
interesting, less acceptable, and less valid.* That’s it.

It’s astounding how much creative thought and social energy gets freed
up when that happens. Everyone blossoms — regardless of their own
bent. The most “normal” people remark on how good it is to feel so
free. Weird, unexpected, but true. I’ll dig up the studies about that.

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