Friday, March 27, 2015

Be Better





She's the reason I subjected myself to speaking in front of a room full of neurologists and a couple of friendly faces today -- or perhaps not the reason but rather the inspiration. The reason I spoke in front of a room full of neurologists today at the Epilepsy Summit in Manhattan Beach was to participate as a parent on a panel to discuss CBD, to share our particular story and to use my own voice and words to support all these families, all these people who are struggling with refractory seizures. Can I tell you that a roomful of neurologists is actually not something that intimidates me but rather challenges me to dig deep and not feel bias, to not have low expectations, to not sigh inwardly at the predictability of how they might respond. Equanimity is what I'm after, and it's taken nearly twenty years to touch its elusive borders. I go into these things conscious of my own bias and emotions, and I try to go in open -- wide open. And every time I do, I feel like an asshole afterward for the attempt. If I told you that those of us present who were NOT neurologists were patronized, condescended to, subtly mocked, mansplained and even bullied, what would you think? There was no discussion. I was very challenged today, and every single low expectation was met. Expletives come to mind, but like my mother always said, Don't stoop to their level. Be better. 










30 comments:

  1. Oh my.

    But this is why you must make your voice heard. You're stickin it to the man.

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  2. I was hoping for something better.
    I'm sorry.
    Crap.
    I hope this day is full of good things. Or at least a couple of drinks. I'm here in Pillville if you need me. Remember, I have a lot of booze hidden in my closet.

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    Replies
    1. Today was a better day because it was family day and all my people were there. I think of you safely ensconsed in Pillville, and it brings me strength.

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  3. Fuck shit. I am sorry.
    Well. One drop of water at a time wears away the mountain.
    And no, don't stoop to their level.
    You are loved. You are speaking truth. That's what is important. For your daughter and for so many children.

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    Replies
    1. Chinese water torture for sure -- and thank you for the love.

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  4. Replies
    1. I loved meeting you! And your beautiful, amazing daughter!

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  5. You are better, and you KNOW better for Sophie.

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  6. As wrong as it is, as bad as it feels, I believe it is better to be, again, disappointed than to go in with a closed mind, closed heart. We hope it, whatever it is, will be easier but we don't count on it. Our Don Quixote. You are a wonder. And dear, beautiful Sophie. xo

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    Replies
    1. Thank you Marylinn! I love the comparison to Don Quixote. He certainly had delusions!

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  7. I'm so sorry you experienced this. It is truly disappointing and discouraging, for you, of course, but also for all of us who hope to find doctors who consider their patients part of the solution, who respect their intelligence and their careful observation of themselves or their child's health, who encourage them to learn and share. My Latvian pediatrician as a child was such a doctor, and my mother always lamented over her loss once she retired from practice. I admire you and appreciate your continued efforts to share what you have learned, and hope that maybe there was one doctor who came away with something. I really hope so.

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    Replies
    1. Thank you Leslie. What you've said is so exactly true.

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  8. I'm sure you saw this: http://lens.blogs.nytimes.com/2015/03/26/medical-marijuana-eases-childhood-seizures/#

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    Replies
    1. A -- I predict the Schedule will be lower within a year.

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  9. How frustrating this must be! And yet I am glad you were there, adding your voice and your experience. I have to believe that there was someone in that room who heard you, and for whom you made a difference. Please know you make a difference here every single day, in this place where we all learn so much from you. I know it sucks to be an inspiration in this way, but you are that nevertheless. Love.

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    Replies
    1. Thank you so much, Angella -- your words mean the world to me.

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  10. Don't you love it when you lower your expectations and then those around you meet those very low expectations?

    You have made a difference though Elizabeth. You have people talking and thinking. Those are good things. Very good things.

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    Replies
    1. Your dark humor always makes me crack up, lily cedar. Thank you.

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  11. Fuck! I am so sorry. And I feel it, I do. A few weeks ago when I was in the room with the Surgeon General I had such high hopes and I was so good at not judging. And then I came away feeling as though I had just attempted to swallow a mouthful of turds. I hate these events that are sold as something that will honor diverse perspectives and only turn out being some elaborate PR stunt. Fuck.

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    Replies
    1. Kario -- How do I love thee? Let me count the ways.

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  12. It is H E double toothpicks being ahead of your time. Whenever and where ever confronted with those condescending mansplainers, look at them and think "You are a Poopyhead. You are a Poopyhead who does not know what he is talking about." Sending love and gratitude for your courage. x0 N2

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  13. I am so sorry to read that it went this way. I was thinking about your courage in doing this today, because I do not like public speaking, and admire you for doing it for Sophie and all who need an eloquent, intelligent, experienced voice, flecked with humor. You deserve better. I send my love xoxo

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  14. i'm betting that in that room of low expectation meeters and outright assholes, there was someone who was quiet. someone who you wouldn't have seen. someone listening. someone maybe not ready to take a stand against the LEMs and the assholes, but listening. processing. changing.

    keep showing up. that one, the quiet one, is listening.

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    1. Thanks so much for your kind words and support, jess. I know that you are always fighting that good fight, too!

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  15. I'm sorry to hear you had to endure all that negativity, especially the "mansplaining". (Love that word. But how did we manage before 2008 - when it was was born? How did we refer to this particularly insidious form of condescension?)*

    You are probably still reeling from the ordeal but remind yourself of the many people you help, inspire, educate - oh, and even entertain - while you're at it.

    * I'm reminded of many of our local male doctors who have addressed me not by name but as "Mommy" when I'd bring C. to be examined. With time, fewer do it and more of the doctors are female so there's been some progress. Needless to say, the female doctors never call me "Mommy".

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    1. The "mommy" thing drives me insane.

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  16. When you are strong enough to speak the truth, few will like it.
    Do not let the fear in others stop you, brave soldier.
    Carry on with courage
    knowing that it is your light
    that will begin
    to awaken the world.

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    Replies
    1. Lisa -- I so appreciate your faith in me and support, always. xoxxo

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