Tuesday, December 1, 2015

The Subversion of Quackery



WPA poster, 1936-1938


quacksalver

PRONUNCIATION:
(KWAK-sal-vuhr) 


MEANING:
noun: A quack: one pretending to have skills or knowledge, especially in medicine.


ETYMOLOGY:
From obsolete Dutch (now kwakzalver), from quack (boast) + salve (ointment). Earliest documented use: 1579.


I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

I lay in bed after the seizure thinking back over the years of her seizures and the years of various doctors' prescribing her anti-convulsants. I thought about the combinations of these drugs -- 22 of them -- their effects on her brain and body systems, how none of them worked, how her seizures still came and how they, the drugs, wreaked more damage, arguably, than the seizures themselves. I thought about the moment when she was nine months old, writhing and screaming uncontrollably all day and night, when I asked the esteemed neurologist whether my baby might be reacting to the combination of the three drugs he had her on, one non-FDA-approved and the other two approved for use in adults. I thought about his response, a hmmmmm over the telephone that stretched into infinity, followed by that's an interesting idea and then the universe tilting on its axis, folding up and disappearing into a black hole from where it had been birthed. I knew in that moment that no one knew what was up with my baby, and if my suggestion was a good idea (I was 31 years old with a Bachelor of Arts in English and French Literature and a Pastry School certificate), we were traversing a no-man's land.

I thought about the moments when we injected her with five vaccines to protect her health and yours, her tiny mouth an O, the subsequent scream that stretched out for years, my own a mirror image. I thought about the derision, the mockery that those of us who question vaccine safety have been subject and then the smugness of Science.

Quack.

I thought about all those moments this morning as I lay beside Sophie, and then I thought about the thousands of families still subject to the multiple drug combinations that these doctors are still peddling, how a young woman contacted me last week to tell me that her 18-month old baby, on four drugs, was still seizing. I thought about the compulsory and draconian laws that were recently passed in California regarding vaccinations and how grateful I am not to have any babies subject to them. I thought about the CBD and the THC and the fight to get it and then the getting it and Sophie's immediate response. I thought about my great good fortune in meeting Ray at Realm of Caring and Dr. Bonni Goldstein and living in California where we have access to high quality cannabis. I thought about the Coloradans: the Stanley brothers, Paige Figi and Heather Barnes Jackson, all of them instrumental in shifting Sophie's path and countless others. I thought about the FACT that Sophie is now off nearly 80% of one drug and 65% of the other, that these two drugs have done irreparable harm to her, even as they are withdrawn. I thought about the cavalier attitude that most neurologists have toward cannabis, their caution and their ignorance. I thought about Obama's acting Drug Enforcement Administration Chief's statements on November 12:

"What really bothers me is the notion that marijuana is also medicinal -- because it's not," Rosenberg told reporters last week. "We can have an intellectually honest debate about whether we should legalize something that is bad and dangerous, but don't call it medicine -- that is a joke.""There are pieces of marijuana -- extracts or constituents or component parts -- that have great promise," he continued. "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana, it has never been shown to be safe or effective as medicine."  

I thought about the wheels of Big Pharma, churning, trying to catch up. I thought about their influence on Science's practitioners, how they pay them to promote and advertise their products, ensure their profits. I thought about the money they must set aside for those damaged by their products, how they are shielded and how little it matters to their bottom line. I thought about quackery and the subversion of quackery -- when what is considered Science is actually not Science at all.

Quack. Quack.

I thought about those who come here and tell me that I'm too angry, that I complain too much, am terrifying, a miserable person. Is there a word for a reverse black hole? For chaos pushing outward, inward? If I were an angry person, I would have long since disappeared. You don't watch your daughter seize for nineteen years and suffer from terrible side effects of drugs and vaccinations that you gave her in good faith and then see her improve dramatically with an oil from a plant that anyone can grow and stay angry. You'd be dead, and I'm very much alive.

Repeat. I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

Quack. Quack. Quack.




25 comments:

  1. This is the most powerful writing of any I've read recently and I read far more than People magazine. Trust me. If there has ever been a more powerful and succinct advocate for a child and her treatment, I do not know who it would be.

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  2. Keep quacking Elizabeth. It's why Robby is having a different experience. Thank you so much.

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  3. This needs to be published and read everywhere, by everyone. This is testimony.

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  4. What you are saying here has impact beyond epilepsy. Beyond seizures. I've been having rolling panic attacks, out of no where-solution is benzodiazepines, as many as you need, here ya go. understanding that medicine has its place and time, but your information and story have made me question just how ugly the standard solution can be, how detrimental and experimental the fix really is. Thank you for informing me.

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  5. If it walks like a duck and sounds like a duck, it's a duck. If a doc won't listen and prescribes meds that don't work and cause harm, that makes them a quack. Doctors need to listen to patients and their parents:)

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  6. Your words say it all. They definitely be published.

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  7. My cat has started to have seizures, so I took him to the vet. She said "I could give you some anti-convulsants for him, but I don't recommend it. There are too many side effects."

    Is irony the right word to describe this situation?

    And please, no one think I am comparing the cat to Sophie. I am comparing the doctor to the vet.

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    Replies
    1. There are more and more marijuana products geared toward pets now.

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  8. Oh the doctors. One shrink got me completely hooked on sleeping pills which are playing havoc with my memory. I have tried and tried to get off them but no go.
    In regards to anger, I have a lot. And it intimidates people at times which makes me sad because I can't see it in myself really which shocks some. It is the intensity, they tell me, the intensity directed at them. Fair enough, I feel the same about anger in some other folks so I get it. I always wish someone could just go into my brain and drain it out. Apparently not.
    - Karen

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  9. Keep talking back to those self-righteous, pig-headed, Big Pharma backing, sons of...

    "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana..." trying to tar all medical marijuana users with the good old-fashioned black brush of "Reefer Madness" thinking. I'm not surprised that a petition to get rid of Rosenberg is gathering signatures apace.

    Hang in there, Elizabeth Dear. x0 N2

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  10. Love it!

    (And how could you NOT be angry, as all of us should be angry, at the manipulation of medicine by profiteering pharma companies and bureaucrats? As you say, you are LIVING the evidence to the contrary.)

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  11. Please do not let trollish comments change your writing or the way you experience yourself. Your blog is really good. Your voice is unique. The ones who would try and infect you with self-doubt are the ones with anger problems.

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  12. Thank you for continuing to share what you know to be true.

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  13. It is disgusting and blows my mind to consider the fact that most neurologists would rather cut out half of a child's brain than consider cannabis oil. I've said it many times how probably over a million dollars in health care has been spent on my son with absolutely no success (and you can't put a price on the physical and emotional suffering...), but a $60 bottle of THC and $200 bottle of CBD helped instantly. Yes, so glad to be back in this state where we have so many options. Scott just got his card again yesterday and we're looking forward to a better quality of life soon.

    Anybody who says you're angry is speaking the truth. We're all freaking angry. Too bad if it makes someone a little uncomfortable to hear about your day to day reality. <3

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  14. Brilliant and necessary. Thank you, Elizabeth.

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  15. I love this. If I had any balls at all, I would post it on my gun-loving, fox news believing, perfect-mothering-I-am-so-blessed-with-my-happy-healthy-exceptional-children, who will grow up to love guns and fox news too, Facebook "friend's" post of a meme that said the following: Please do not confuse your Google search with my medical degree. And then I would tell her to shut the fuck up before un-friending her. But, I'm working on being nice. Also, she is my next-door neighbor - and did I mention the guns? I usually don't comment this honestly online, but I really need to vent this once! Please forgive my use of Anonymous. My name is Erin.

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  16. Read and wowed, there is so much here that makes my heart heavy-with anger and with relief at feeling the loneliness abate for a moment. You are not alone and you are glorious. Keep droppin' (it like it's hot and THC, that is) :)

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  17. It is a huge thing that now when Sophie has a seizure, you have something that you can give her that can stop it, let her rest and continue with the day, and you with yours. That the epilepsy groups and doctors are not jumping on this is a damned shame. You are doing your part and more to get the message out. If I were responsible for anyone, including self with seizure issues, I would be all over this.

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  18. I continue to hold out hope that there is a next generation of physicians out there who are coming of age in a time when Science is not held as Truth when it is offered from the mouths of those whose pockets are lined with cash from pharmaceutical companies. Thank goodness for parents like you who continue to push for information and ask questions and seek answers in lots of different places. Thank goodness for the internet that allows us to connect with other folks whose truth sounds a lot like ours. Love.

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  19. Such a great post Elizabeth. From Asheville NC my heart goes out to you and yours. Smugness is a kind of selfishness, the plague of our times.

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  20. Ugh! I wish Rosenberg had been in my house the day I tried smoking pot. I was on my 3rd chemo cycle. I took a fist full of pills every day to try and counteract the side effects. None of those worked but made me feel awful with side effects. So I had chemo side effects and side effects from pills that didn't help the chemo side effects. I was laying on the bathroom floor ready to die. Vowing that I wouldn't get the 9 other chemo cycles that I needed. My husband was desperate and called his cousin. I took 3 hits off a joint and in 20 minutes was up and making scrambled eggs for us all. I smoked the rest of the time and have zero regrets.

    The not haha funny part is that I stopped filling the prescriptions to pay for the pot. We came out ahead.

    I'm fine now but if I ever need it again, I won't hesitate.

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