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4:44pm July 30, 2015

 The Myth of "Official": autism and self-diagnosis skeptics

I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity.  If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have.  The fact that they didn’t respect my official diagnosis, says everything.  They only say this crap to manipulate people.

4:39pm July 30, 2015

Necklaces:  Redwoods, and my dad’s beard in a floating locket.

4:31pm July 30, 2015

 How Snobbery Helped Take The Spice Out Of European Cooking

tchy:

tchy:

A really cool article about one of my weird niche interests (ask me about Renaissance recipes sometime, they’re great).

Since I have my main cookbook right by me at the moment, here’s a small sample of some flavour profiles from Renaissance England, prior to the shift in European cooking styles that’s described in this article–all of them from savoury recipes involving meat:

  • Rosemary, currant, ginger, cinnamon, nutmeg, brown sugar, pepper.
  • Shallot, mustard, nutmeg, honey, white wine vinegar.
  • Onion, rosemary, marjoram, thyme, savoury, bay, parsley, pistachio.
  • Sage, shallot, mace, parsley, nutmeg, pepper.
  • Parsley, mint, sage, caraway, coriander, nutmeg, capers.
  • Fennel, savoury, rosemary, thyme, bay, cinnamon, nutmeg, ginger.
  • Nutmeg, pepper, parsley, thyme, rosemary, cloves, grapes.

Hardly the plain boiled fare most people picture in traditional English cooking, right?

Renaissance food is awesome.

This has been intermittently getting a note or two and it’s awesome so I’m going to reblog it again. Everyone learn about one of my strange niche hobbies.

4:31pm July 30, 2015

Please help.

fullyarticulatedgoldskeleton:

I’m a mentally ill, disabled person living on my own. Right now I’m applying for SSI, and it will be months before I get my evaluation. In the meantime, I can’t afford my basic living expenses without help.

If you can, please donate to desertlily777@hotmail.com on Paypal. This is my friend’s Paypal, so please leave a note saying that this is ‘for Skeleton.’*

Signal boosts would be greatly appreciated, too. Thank you.

*It was formerly ‘for lichgem’ before I changed my URL.

3:49pm July 30, 2015
My dad’s summer hat.

My dad’s summer hat.

3:24am July 30, 2015

A doctor discovers an important question patients should be asked

madeofpatterns:

withasmoothroundstone:

madeofpatterns:

specialsomeone212:

madeofpatterns:

dbd-jk:

cranquis:

sketchshoppe:

This patient isn’t usually mine, but today I’m covering for my partner in our family-practice office, so he has been slipped into my schedule.

Reading his chart, I have an ominous feeling that this visit won’t be simple.

A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.

He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.

Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him.

Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.

With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.

After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum.

A cardiologist and a nephrologist haven’t been able to help him, I reflect,so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… .

Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try.

Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”

I pause, then look this frail, dignified man in the eye.

“What are your goals for your care?” I ask. “How can I help you?”

The patient’s desire

My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.

He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.”

His daughter, looking tense, also faces her father and waits.

“I would like to be able to walk without falling,” he says. “Falling is horrible.”

This catches me off guard.

That’s all?

But it makes perfect sense. With challenging medical conditions commanding his caregivers’ attention, something as simple as walking is easily overlooked.

A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”

Suddenly I feel that I may be able to help, after all.

“We can order physical therapy — and there’s no need to admit you to the hospital for that,” I suggest, unsure of how this will go over.

He smiles. His daughter sighs with relief.

“He really wants to stay at home,” she says matter-of-factly.

As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.

“I know that you’ve decided against dialysis, and I can understand your decision,” I say. “And with your heart failure getting worse, your health is unlikely to improve.”

He nods.

“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”

Again, his daughter looks relieved. And he seems … well … surprisingly fine with the plan.

I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable — at home.

Back home

Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It’s somewhat hard on his wife to have him die at home, she says, but he’s adamant that he wants to stay there.

A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.

The nurse confirms that he is near death.

I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?

Two days later, and two months after we first met, I fill out his death certificate.

Looking back, I reflect: He didn’t go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.

Several months later, a new name appears on my patient schedule: It’s his wife.

“My family all thought I should see you,” she explains.

She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she’s lost some weight. No, she isn’t depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.

“He liked you,” she says.She’s suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.

I ask why.

“They were just doing more and more tests,” she says. “And I wasn’t getting any better.”

Now I know what to do. I look her in the eye and ask:

“What are your goals for your care, and how can I help you?”

-Mitch Kaminski

Source

THE important question.

This.

I agree with the literal meaning of what’s being expressed here, but I think in context the article was written to promote a particular view of what care should look like. 

Articles written in this particular tone have a slant. A hospice-related slant.

I’ve never seen an article about respecting choices tell the story of someone who said “I want to try everything that might help me survive” or “I want to investigate experimental treatment”. Or where someone asks for a feeding tube because of how exhausting their fight to eat has become.

(And, incidentally, someone who wanted physical therapy in an ongoing way would not get able to get it if they were on hospice. If you’re on hospice, only care considered palliative is covered; not care considered treatment. So, generally speaking, you can get a session or two with a PT, but you can’t get ongoing therapy. You can’t can’t generally get hearing aids, speech generating devices, or any other kind of personalized adaptive equipment covered. Hospice is always presented as a beautiful place where people’s choices are respected and they control the end of their life — but that’s only true for people with a fairly narrow range of preferences.)

There is another solution as well. It is expensive, but available. If the spouse is no longer living, there are independent geriatric case workers who, for a relatively smallish fee (a few hundred dollars a month) can set up the elder person with whatever services are available in their area, from weekly visitations to live-in help round the clock. As the elder Ages In Place, more services become available, until the need for hospice becomes evident. But the patient described was beyond those milestones, and ready for compassionate care, which he received from the doctor who was willing to ask the question this patient needed.

The article suggests through innuendo that this man was past the point of benefitting from treatment. The literal facts it describes do not suggest that.

The actual facts it describes are:

  • A man had heart failure and kidney failure
  • Management of his conditions was complicated (because treatment for one worsened the other)
  • Dialysis would have been an effective ongoing treatment, but he was unwilling to get dialysis 

This isn’t a description of someone with an untreatable condition getting compassionate end of life care. It’s a description of someone who refused available treatment, and died as a result.

People have the right to refuse treatment for life-threatening medical conditions, but I don’t see that as something to celebrate. 

Articles like this always celebrate someone’s decision to choose death. That’s the only choice that is depicted positively. Even further than that, it’s often depicted as the universal choice that all patients make when their choices are respected.

And, in real life, there are elderly men with renal failure and heart failure who are choosing dialysis and are happy with that decision. And there are elderly men who are refusing treatment and are happy with that decision. And there are people being coerced in both directions.

This article, and others like it, aren’t really about choices or patient autonomy. If they were, they would tell diverse stories about choices. They would tell stories of patients who chose to be treated, alongside the stories of patients who did not. But, they only ever tell the one story. That’s not what choice is.

When only the choice to refuse treatment is depicted positively, that’s not really a story about respecting and facilitating choices. It’s a story about encouraging patients to refuse treatment.

I’m all for patient directed goals and autonomy. And I wish that’s actually what this article was about. 

I am so glad I read through this towards the end of the article.

When I talk about how my father eventually chose to end chemo because it wasn’t doing anything but making him sick and wasn’t making his (very, very terminal, metastatized everywhere) cancer any better… so many medical professionals I know nod sagely and mutter something triumphant about “you want quality of life, not quantity of life”. 

And the thing is, that’s not what my dad was about, and that’s not what he was doing.  He wasn’t acting on some kind of abstract principle of quality versus quantity.  He didn’t even have a choice whether he lived or died.  He just didn’t want to die sick from chemo that wasn’t working anyway.  Continuing chemo would not have had any benefit to begin with, not even extending his life a little.  Acting like he had much of a choice in the matter makes me really angry.  So does acting like he chose death in some sort of noble way that upholds someone else’s principles.  He chose the least shitty option of a lot of shitty options, and he really didn’t have much choice even then.

He was okay with his death in the end.  And he died unafraid, at home, without pain, pretty much exactly how he wanted to die, and that’s wonderful.  (He was afraid the pain would come back, but towards the end of his life, the pain just stopped for some reason.  Maybe that part of his body had just shut down too far to feel it anymore.)  But I would be really angry if the hospice movement or worse, the right-to-die movement (not that the two don’t have lots of intertwined connections that nobody wants to talk about), started using him as an example of their ideologies, because that’s not what he was about.  He wanted to live as long as possible.  He was just aware when the time came that he was truly dying and nothing was going to stop it, and he handled that as gracefully as he could manage.

People who are sick or dying, terminally or precariously ill, are human beings.  We make choices about our lives.  We are not simply bullet points to be used to prop up ideologies.  And if people were really so big on choice, then what happened to me with my feeding tube (it wasn’t denied, they just tried everything to talk me out of it at a time when not getting it meant certain death) would never have happened.  And my choice to get a feeding tube wouldn’t have been regarded as stupid or selfish.  (Anyone hear the one yet where people who want to die are selfless and people who want to live with severe disability or terminal or precarious illness are selfish because we take up too much time, money, and effort, and the noble thing would be to choose death?  Yeah, I’ve heard it way too often too.)

Anyway, thank you last couple posters for exposing the truth behind this story and the ideologies that make stories like this so common but their opposites so rare.

Another one I always hear: “We can keep people alive, but it doesn’t mean we should.”  (headdesk)

I really hate how self-satisfied some medical professionals get, hearing of my father’s death.  With the ugly platitudes about “quality of life not quantity of life” and the feeling that they know they’re right, they totally know they’re right, and they’re happy that my father chose what they think people should choose.  When my father didn’t have any damn choice at all, he’d have chosen life if he’d been able to.  The fact that he was actively dying, with cancer in nearly every part of his body they looked for it in, gets overlooked: there was no chance of a cure here.  WTF.  He didn’t die for anyone’s ideology any more than he lived for anyone’s ideology.  He made a personal choice out of a number of equally shitty options, and he made it work for him, and his death was beautiful in its own way, but it was not anyone’s talking point.  FFS.

If those doctors had succeeded in killing you, they’d probably have been congratulating themselves on ~respecting the patient’s choices~ or ~accepting our limitations as physicians~. When really all they’d be is murderers.

Yep totally.

3:20am July 30, 2015

madeofpatterns:

“choice” should not be a euphemism for death

3:19am July 30, 2015

karalianne:

One thing that has always bothered me about disability service providers is how much they talk about “allowing the individuals to make choices” like it’s some magnificent thing to allow someone who has a developmental disability to decide anything for themselves. Examples of choices these people are “allowed” to make include

  • what they’re going to wear each day
  • what they’re going to eat for meals
  • when they want to bathe
  • who to hang out with
  • whether to sleep in
  • which activities to participate in at their day program

Basically all things people who do not receive these kinds of supports decide on a regular basis without even thinking about it. (And no, you can’t tell me that it’s because they have low IQ’s or something because seriously preschoolers make most of these choices by themselves without being “allowed” to do so and if you’re refusing to accept that an adult should naturally have more freedom than a small child I don’t know what to say.)

And they talk about giving the individuals “choice and control” and about “allowing” individuals to have romantic relationships and stuff like that and when you get right down to it these people (the ones receiving services) don’t actually have a whole lot of freedom. I mean, if they want to do something that’s potentially risky, their staff assess and don’t let them if it’s deemed “too risky.” (That’s never really defined, I don’t know what “too risky” actually means.)

And I am sure that most frontline staff (the people who work directly with the individuals receiving service) don’t realize how much power they have and don’t realize that their questions to make sure they understand what someone wants can end up influencing their final choices. Because we’re talking about people who are taught from a very young age that they must do what they’re told by the adults in their lives, and when they’re adults themselves that translates to doing what staff tell them to do. 

Just some random thoughts.

3:18am July 30, 2015

 What's your Doctor Who birthday episode?

natalunasans:

madmanswords:

lovelylovelyruthie:

Add your answer in the tags…

Why did I click on this? What did I expect?

I was born in 1993….

closest: The Three Doctors - Part 1
First broadcast: Saturday 30th December, 1972 (wrong end of the month for my bday but a significant episode so i’ll take it.)

Closest:

The Leisure Hive - Part 1

First broadcast: Saturday 30th August, 1980

The Doctor and Romana visit the Leisure Hive on the planet Argolis, the surface of which is uninhabitable following a twenty minute nuclear war between the Argolins and their enemies, the Foamsi. The Argolins themselves are now sterile. Pangol, the youngest, was created by the Tachyon Recreation Generator, a machine that runs games in the Hive.

Wow, my favorite doctor (the fourth) too!

1:55am July 30, 2015

madeofpatterns:

slashmarks:

madeofpatterns:

slashmarks:

the entire plot of the Star Wars films repeatedly shows Jedi dogmatism and ideals are unrealistic, and the Jedi causing problems for the entire galaxy with their black and white morality and religious authority happens continuously

so why does the EU consistently act as though they are gods who are never wrong

THIS.

I’d totally rather be a Sith.

Because if you’re going to be a villain, you may as well get all the super powers.

there’s also like…. 

one of the things that strikes me when I write star wars fanfic is that being a Sith gives you a lot more freedom in how you apply philosophy, in part because they don’t automatically declare any prominent minority view or splinter group a heresy and lead a centuries long crusade to kill all the followers of it

the Jedi do this a lot in the expanded universe and it’s never really treated critically

(also the kind of villains the Jedi are horrifies me viscerally in a way that Evil Overlord tropes do not, frankly.)

Lawful evil is the most horrifying. But it’s not just that. I think it’s related to why Ender’s Game is horrifying.

It makes totalitarianism feel like liberation, or something.

Yes, lawful evil terrifies me in a way chaotic evil and neutral evil don’t.  And part of it is the equating of lawful with good that a lot of people do.  Like lawful good is considered the most good (chaotic good is seen as weird at best, an oxymoron at worst) and chaotic evil is considered the worst evil.   And even though history, including very recent history and current events, is full of lawful evil people, people still ignore it.

(And yes I know this is about more than being lawful evil, but being chaotic good, I sometimes feel the need to emphasize it.)

1:42am July 30, 2015

A doctor discovers an important question patients should be asked

madeofpatterns:

specialsomeone212:

madeofpatterns:

dbd-jk:

cranquis:

sketchshoppe:

This patient isn’t usually mine, but today I’m covering for my partner in our family-practice office, so he has been slipped into my schedule.

Reading his chart, I have an ominous feeling that this visit won’t be simple.

A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.

He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.

Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him.

Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.

With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.

After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum.

A cardiologist and a nephrologist haven’t been able to help him, I reflect,so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… .

Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try.

Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”

I pause, then look this frail, dignified man in the eye.

“What are your goals for your care?” I ask. “How can I help you?”

The patient’s desire

My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.

He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.”

His daughter, looking tense, also faces her father and waits.

“I would like to be able to walk without falling,” he says. “Falling is horrible.”

This catches me off guard.

That’s all?

But it makes perfect sense. With challenging medical conditions commanding his caregivers’ attention, something as simple as walking is easily overlooked.

A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”

Suddenly I feel that I may be able to help, after all.

“We can order physical therapy — and there’s no need to admit you to the hospital for that,” I suggest, unsure of how this will go over.

He smiles. His daughter sighs with relief.

“He really wants to stay at home,” she says matter-of-factly.

As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.

“I know that you’ve decided against dialysis, and I can understand your decision,” I say. “And with your heart failure getting worse, your health is unlikely to improve.”

He nods.

“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”

Again, his daughter looks relieved. And he seems … well … surprisingly fine with the plan.

I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable — at home.

Back home

Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It’s somewhat hard on his wife to have him die at home, she says, but he’s adamant that he wants to stay there.

A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.

The nurse confirms that he is near death.

I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?

Two days later, and two months after we first met, I fill out his death certificate.

Looking back, I reflect: He didn’t go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.

Several months later, a new name appears on my patient schedule: It’s his wife.

“My family all thought I should see you,” she explains.

She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she’s lost some weight. No, she isn’t depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.

“He liked you,” she says.She’s suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.

I ask why.

“They were just doing more and more tests,” she says. “And I wasn’t getting any better.”

Now I know what to do. I look her in the eye and ask:

“What are your goals for your care, and how can I help you?”

-Mitch Kaminski

Source

THE important question.

This.

I agree with the literal meaning of what’s being expressed here, but I think in context the article was written to promote a particular view of what care should look like. 

Articles written in this particular tone have a slant. A hospice-related slant.

I’ve never seen an article about respecting choices tell the story of someone who said “I want to try everything that might help me survive” or “I want to investigate experimental treatment”. Or where someone asks for a feeding tube because of how exhausting their fight to eat has become.

(And, incidentally, someone who wanted physical therapy in an ongoing way would not get able to get it if they were on hospice. If you’re on hospice, only care considered palliative is covered; not care considered treatment. So, generally speaking, you can get a session or two with a PT, but you can’t get ongoing therapy. You can’t can’t generally get hearing aids, speech generating devices, or any other kind of personalized adaptive equipment covered. Hospice is always presented as a beautiful place where people’s choices are respected and they control the end of their life — but that’s only true for people with a fairly narrow range of preferences.)

There is another solution as well. It is expensive, but available. If the spouse is no longer living, there are independent geriatric case workers who, for a relatively smallish fee (a few hundred dollars a month) can set up the elder person with whatever services are available in their area, from weekly visitations to live-in help round the clock. As the elder Ages In Place, more services become available, until the need for hospice becomes evident. But the patient described was beyond those milestones, and ready for compassionate care, which he received from the doctor who was willing to ask the question this patient needed.

The article suggests through innuendo that this man was past the point of benefitting from treatment. The literal facts it describes do not suggest that.

The actual facts it describes are:

  • A man had heart failure and kidney failure
  • Management of his conditions was complicated (because treatment for one worsened the other)
  • Dialysis would have been an effective ongoing treatment, but he was unwilling to get dialysis 

This isn’t a description of someone with an untreatable condition getting compassionate end of life care. It’s a description of someone who refused available treatment, and died as a result.

People have the right to refuse treatment for life-threatening medical conditions, but I don’t see that as something to celebrate. 

Articles like this always celebrate someone’s decision to choose death. That’s the only choice that is depicted positively. Even further than that, it’s often depicted as the universal choice that all patients make when their choices are respected.

And, in real life, there are elderly men with renal failure and heart failure who are choosing dialysis and are happy with that decision. And there are elderly men who are refusing treatment and are happy with that decision. And there are people being coerced in both directions.

This article, and others like it, aren’t really about choices or patient autonomy. If they were, they would tell diverse stories about choices. They would tell stories of patients who chose to be treated, alongside the stories of patients who did not. But, they only ever tell the one story. That’s not what choice is.

When only the choice to refuse treatment is depicted positively, that’s not really a story about respecting and facilitating choices. It’s a story about encouraging patients to refuse treatment.

I’m all for patient directed goals and autonomy. And I wish that’s actually what this article was about. 

I am so glad I read through this towards the end of the article.

When I talk about how my father eventually chose to end chemo because it wasn’t doing anything but making him sick and wasn’t making his (very, very terminal, metastatized everywhere) cancer any better… so many medical professionals I know nod sagely and mutter something triumphant about “you want quality of life, not quantity of life”. 

And the thing is, that’s not what my dad was about, and that’s not what he was doing.  He wasn’t acting on some kind of abstract principle of quality versus quantity.  He didn’t even have a choice whether he lived or died.  He just didn’t want to die sick from chemo that wasn’t working anyway.  Continuing chemo would not have had any benefit to begin with, not even extending his life a little.  Acting like he had much of a choice in the matter makes me really angry.  So does acting like he chose death in some sort of noble way that upholds someone else’s principles.  He chose the least shitty option of a lot of shitty options, and he really didn’t have much choice even then.

He was okay with his death in the end.  And he died unafraid, at home, without pain, pretty much exactly how he wanted to die, and that’s wonderful.  (He was afraid the pain would come back, but towards the end of his life, the pain just stopped for some reason.  Maybe that part of his body had just shut down too far to feel it anymore.)  But I would be really angry if the hospice movement or worse, the right-to-die movement (not that the two don’t have lots of intertwined connections that nobody wants to talk about), started using him as an example of their ideologies, because that’s not what he was about.  He wanted to live as long as possible.  He was just aware when the time came that he was truly dying and nothing was going to stop it, and he handled that as gracefully as he could manage.

People who are sick or dying, terminally or precariously ill, are human beings.  We make choices about our lives.  We are not simply bullet points to be used to prop up ideologies.  And if people were really so big on choice, then what happened to me with my feeding tube (it wasn’t denied, they just tried everything to talk me out of it at a time when not getting it meant certain death) would never have happened.  And my choice to get a feeding tube wouldn’t have been regarded as stupid or selfish.  (Anyone hear the one yet where people who want to die are selfless and people who want to live with severe disability or terminal or precarious illness are selfish because we take up too much time, money, and effort, and the noble thing would be to choose death?  Yeah, I’ve heard it way too often too.)

Anyway, thank you last couple posters for exposing the truth behind this story and the ideologies that make stories like this so common but their opposites so rare.

Another one I always hear: “We can keep people alive, but it doesn’t mean we should.”  (headdesk)

I really hate how self-satisfied some medical professionals get, hearing of my father’s death.  With the ugly platitudes about “quality of life not quantity of life” and the feeling that they know they’re right, they totally know they’re right, and they’re happy that my father chose what they think people should choose.  When my father didn’t have any damn choice at all, he’d have chosen life if he’d been able to.  The fact that he was actively dying, with cancer in nearly every part of his body they looked for it in, gets overlooked: there was no chance of a cure here.  WTF.  He didn’t die for anyone’s ideology any more than he lived for anyone’s ideology.  He made a personal choice out of a number of equally shitty options, and he made it work for him, and his death was beautiful in its own way, but it was not anyone’s talking point.  FFS.

1:14am July 30, 2015

The People Who Live On This Island Will Kill Anyone Who Tries To Come Ashore

taintedlips:

amazighprincex:

onlyblackgirl:

culturenlifestyle:

image

North Sentinel Island, located in the Bay of Bengal, between Myanmar and Indonesia, is home to an isolated tribe that has never been colonized or even made contact with. These people are one of the last Stone Age tribes on Earth whose culture has been completely untouched by modern civilization.

Keep reading

Good.
Leave them alone.

“Stone Age tribes” “untouched by modern civilization”

what a bunch of white supremacist bullshit

they are not “Stone Age,” they are not “untouched by modern civilization,” they ARE a modern civilization… seeing as how they are a civilization that exists currently, today, in the modern world

whiteness is not a measure of modernity. colonization is not a marker of progress

Reblogging for the comment ^^^^
Some people have no fucking idea that there are many many many people in all different parts of the world who still live off the land. And there is absolutely nothing wrong with that

1:13am July 30, 2015

“Kindness is more important than wisdom, and the recognition of this is the beginning of wisdom.”

— Theodore Isaac Rubin. (via quotedojo)
7:10pm July 29, 2015

deafcecil:

so! i finally made a group for people with Ehlers-Danlos Syndrome who are also, in any way, members of the LGBTQ+ community!

anyone is welcome to join, regardless of whether you are officially or self diagnosed with EDS! all you have to do is join on Facebook – the group is set so that you can join but no one in your friends list will be able to see what you post in it. 

A lot of EDS groups are filled with cishet people, and it can make it pretty hard to express ourselves fully, or be understood in the intersections of EDS and queer/trans life we experience. 

the group can be found here! it’d be great if you could reblog this to signal boost, so as many folks can find it as possible! :) 

Are queer people with hypermobility syndrome who’re unsure if it’s EDS welcome?  (I know that some doctors consider all hypermobility syndrome a form of EDS and others don’t.  I’m diagnosed with hypermobility syndrome but have never been tested for EDS, although plenty of things beyond joint hypermobility run in the same parts of the family that the hypermobility runs in, like organ prolapse and aortic aneurysms and stuff, so we know there’s some kind of connective tissue thing but we don’t have a specific diagnosis beyond HMS.)

Either way, signal boosting.

10:56am July 28, 2015

[Uhura attacks and disarms Lieutenant Marlena Moreau in a parallel universe.  And then guards her at phaser-point.]

Note that Uhura was possibly the only member of the crew in that room who could fully disarm Marlena:  The women’s uniforms are different from the men’s uniforms, and include a dagger worn on the leg.  You can see Uhura grabbing Marlena’s dagger in the first picture.

This is from the episode “Mirror, Mirror”, s02e04 of Star Trek: The Original Series.