Friday, April 24, 2015

Finding a Still Space in a Mad, Mad World

I had an interesting discussion with the doctor who helps us dose cannabis and monitor Sophie's progress on the oil. We spoke a bit about the obduracy of Certain Neurologists. She agrees that it's a real and maddening, frustrating puzzle and also believes that the deeply wired ethic of the field demands a sort of ego superiority over the patient and definitely over the parent of the patient. When I try to look back in an unbiased way at the many encounters I've had over the years with neurologists from all over the country, I am really struck by the negative similarities that go way beyond what we might have once called bad bedside manner. I've agonized over my biases -- am I too angry? too stubborn? too opinionated? too too? I wonder whether the neurology field attracts a certain kind of personality or whether the personality is affected by the field -- a kind of chicken or egg coming first conundrum. We all grew up hearing the expression It isn't brain surgery, after all! to describe even the most herculean task in comparison to what is perceived as the most difficult branch of medicine. Yet, there's this arrogance that reveals itself in the cannabis revolution as a cover for what might just be a nearly primitive fear or shame, a tail-between-the-legs kind of running away when the dog isn't chained to a post, lunging and barking. This morning as I contemplated the universe, I nearly laughed aloud at an article in the paper describing the creation of an atomic clock so precise that it won't lose or gain a single second in 15 billion years -- roughly the age of our universe. Get me one of those.

Yesterday, Sophie didn't have a single seizure -- not even a small one.


  1. oh, the arrogance of some scientists. can you imagine the kinds of clocks we'll have in 15 billion years? hooray for Sophie's seizure free day!


  2. Yeah. Because time is so real.
    I have known one neurosurgeon personally in my life. He used to be quite the arrogant ass but then he went through some horrible medical problems of his own and he changed a lot. We went into pain management. Now he is retired and as far as I can tell, has become a very, very sweet man and takes good care of his wife who is now going through treatment for a very serious medical problem herself.

  3. So what I guess I'm saying is- these scientists and doctors have no real boots on the ground, so to speak. They keep themselves removed from reality whether purposefully or not. Until the day comes when they cannot.

  4. This reminds me of the neurologist who told my mother she should institutionalize me and throw away the key because I would never amount to anything. When she disagreed and called him an asshole, he proceeded to make an appointment for her with a psychiatrist, telling her he thought she was delusional...
    We lived overseas and this was the sixties, so no Epilepsy Foundation, no support groups for parents and no one having her back...
    When she told me this story as a teenager about to leave for college, I felt angry on her behalf but I also felt guilty, as though, if not for me, she would not have gone through all the crap she did...

    Today, I am grateful and I detest our medical system as much as you do.

    1. Hurray for a seizure free day. SO amazing.

      I always heard the expression as "rocket science." Astronauts seem to be a more decent, respectful people. At least I hope so.

      e, I fear my daughter often feels the same way. Any crap I have gone through has been worth it a million times over to get to be her mom.

    2. Thank you. Your daughter is lucky to have you as a mom if that is how you feel about her.

  5. My 7-year old daughter experiences daily seizures (infantile spasms). She always has one in the morning, and several more throughout the day. I started giving her CBD oil on December 24th, 2014. She is also taking Sabril and Onfi and experienced a bad reaction with CBD oil and Onfi. We are currently trying to wean her off Onfi. I was hoping you would share your CBD oil dosing protocol (amount and times given) with us since Sophie is experiencing good results.

  6. Yay for a seizure free day. About the neuros..... Maybe our Sophie's and Mike's and others make them feel like failures of sorts--- they've thrown dozens of meds at them with no success and done some harm to them in many instances. Maybe they are so entrenched with big pharma they just can't fathom a simple could possibly provide relief. Maybe they're afraid to be exposed? Maybe.

  7. YEA !! for a seizure free day for Sophie (and her Mom and her whole family).

    I can't even comment on the stupidity, arrogance and cold heartedness of this branch of the medical field as it makes me so angry - well, frustrated - well, incredulous - well, murderous - yes, that's it, murderous. But I was glad to hear Ms. Moon's story. That's what we hope for (well, the least of what we hope for), that they should stand in the shoes of those they "treat".

    And goodness, that photo is spectacular. That's what I think our brains look like - with pretty little neurons floating around looking like christmas ornaments sending lovely messages everywhere. That's what Sophie's brain is full of today.

  8. Hallelujah for a seizure-free day. I hope today is another one.

    I can't comment on the neurologist speculation, but in my experience working with surgeons, I will say that there seemed to be several common personality traits among them. Again, I have no idea which came first, but I did chalk a lot of the ego up to the fact that it takes an insane amount of either confidence (even if it's false bravado) or emotional detachment (or a mix of both) to slice into a human being, even if you're doing it to help them. None of the surgeons I ever worked with tolerated someone second-guessing them or challenging their medical opinion. If I ever need a surgeon, I will be sure to at least find one who is as well-educated on the most current medical research as possible and if I disagree with him or her, I'll be sure to figure out a way to make them think it was their idea first.

  9. I've found most doctors don't like people or patients to have opinions. My own doctor is wonderful and actually listens. She delivered Katie and still takes care of Katie.

    Glad to hear there was a seizure free day:)

  10. i hope she has many more of those days again.



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