Wednesday, August 8, 2012

Seizures, the universe, humor, grace and God

God, Blessing the Seventh Day - William Blake, c. 1805

My last post got many kind comments, some nearly over the top in praise of both my writing and miracle-creating abilities. I'm so thankful for this incredibly supportive community, and while I'll admit to being a kind of comment whore, I am, most decidedly, not a holy person with a direct connection to God and miracles. I'm not sure I even believe in miracles -- other than those tiny moments of grace when despair and worry and trial lift, effortlessly, and leave peace and humor and relief in their wake. I've experienced many such moments of grace and feel it's my duty, in a way, to be open to them, to acknowledge them, to give them attribution, and while I hesitate to use the word God in these over-religious, political (as opposed to spiritual) times, I am deeply grateful to what is, apparently, an abundant universe, where divine love always balances out its opposite.

When I interfered with Sophie's seizure, I was really only practicing the advice given in one of my own bibles, a book called Epilepsy: A New Approach by Adrienne Richard and Joel Ritter, M.D. I bought this book in the late 1990s and believe there's a newer edition, but its subtitle - What Medicine Can Do, What You Can Do For Yourself explains its initial appeal to me when I was just beginning the godforsaken journey of uncontrolled seizures, when Sophie was a bitty baby, drugged out of her mind quite literally, and I began to realize that my daughter's brain was perhaps as dark a space as the heavens, before God made some order, and that it might, perhaps, be up to me to create a bit of light. That book, along with Anthony Weill's Spontaneous Healing wasn't handed over to me like tablets, but rather appeared on a pitiful shelf of books in the Alternative Medicine section of the Barnes and Noble on 86th Street in New York City. Yes, it was a moment of grace, and I'm deeply grateful to Richard, Ritter and Weill for opening my eyes and helping to set me on a path that perhaps afforded more potential to Sophie than were I to follow the traditional one.

Here's the passage:


A team of researchers from the University of Utah Medical School set out to test the possibility of stopping seizures in a population of developmentally delayed schoolchildren. In almost every case, the children had no more seizures.

The method the researchers used was startle-and-shake. It requires the existence of an observable preliminary behavior: staring at a flat surface, raising the arms, a strange tone of voice, hyperactivity, and so on. The support person acts to interrupt the sequence by following these steps:

  1. Shout "NO!" loudly and sharply to draw attention outward.
  2. Grasp the person by the shoulders and shake him or her once. This changes the body's preseizure mode.
  3. Give a little reward, a hug, an excited "You stopped it!" Offer any sort of praise or love for arresting the seizure. Let the good feeling, not candy or whatever, be the reward.

As for Oliver calling me a miracle-maker, it was said with great irony and therefore another moment of grace -- that my children can rise up and up and up and find humor even in the darkest moments is a wonder, something I am so grateful for that I'd venture to say it sustains me.


  1. Just love. You , your genius, your writing,
    your heart.

  2. Elizabeth - I get what you are saying and yet I still think of you and your boys' way of dealing with an incredibly difficult situation with Sophie as a sort of miracle -- maybe it is just a miracle I feel I observe when you share a glimpse of what your life is like. Ino religion in my thoughts, just miraculous love and perserverance and strength. I feel proud to read your thoughts here. Sweet Jo

  3. You're too modest! :)

    I saw someone using this method on a man in an airport once. He had fallen to the floor, carry-on bag and coat all akimbo, and the airport medic had shouted at him - "NO NO NO Stop this now!"

    At first I thought the medic was being cruel, but now I understand (thanks to your educating me on the matter), he was just a very, very good medic.

  4. The word "miracle" is definitely overused. I think what you describe here, in the gift of these books and other knowledge you have acquired to help you, in the gifts of your children, of humor and love and moments of unpredictable relief, is, as you say, "grace." And perhaps "grace" is no less a miracle. (Although a miracle would still be nice...)

  5. I loved your line: "I'm not sure I even believe in miracles -- other than those tiny moments of grace when despair and worry and trial lift, effortlessly, and leave peace and humor and relief in their wake."

    Beautifully said. I think we all live for those moments and to see someone we care about get to experience one and then have the skill to communicate it to us in your inimitable "Elizabethness" is why we show up, and share and praise. It is just the human spirit, so deeply wanting to connect with, experience and share Love. Something you do so well.

    I get that you are ohsohuman, it's part of your draw, and your quick modesty in the face of any praise probably keeps you grounded, as it is wont to do. But I disagree about you not being holy or having a direct connection to god/whatever it is. We are all holy and all connected - we just don't see it in ourselves or are able to access it very often. You have a special gate to get there, those three incredible young beings you live with. And it is a complete and utter joy to be able to join in when you share them - those moments, those children - with us.

    People who read you consistently know very well who you are - the light, the dark and the moments of Grace. Not fans, just fellow travelers who are lucky enough to know where to look for the really good stuff.

  6. Grace.

    Seems on some days, it is the only thing that helps me find my way.

    And humor, well, you know I just wrote about just that.

    I am grateful for both and for you as well, my wise and beautiful friend.

  7. you have made me very interested in reading these books. you know, i am someone who just eats what im spoonfed regarding Western medicine but i should probably explore these avenues as well bc western medicine/drugs haven't stopped the seizures and have a whole host of side effects!

  8. This "disruption of seizure" technique (or our variation of it) works with Nolan some of the time (maybe 50+%)...the fact that we could pull him from the seizure state before it really started was the exact reason doctors originally insisted they were not really seizures, but, panic attacks. Until he had his first 2 hour status, that is...then they changed their minds;) QUICKLY

    I do agree with the others - Your writing is heavenly --- thank you for sharing

  9. Finding humor in the darker moments: Yes.

    It's what my boys and I have survived on for many years.

    You are a wonder.


  10. I just read that post.
    I think you're in tune more than anything.
    Our dog has big, bad seizures about very 8 weeks and I'm learning. The other night I had a feeling that one was coming on - his eyes get really far away and start scattering all around the room. I distracted him with roughing him up like he was a puppy. He didn't seize, so i don't really know if i was imagining it. I forgot all about that until I read this ... I wonder ...

  11. I had no idea it was even possible to stop a seizure. That's an amazing bit of information.

    I love this sentence: "I began to realize that my daughter's brain was perhaps as dark a space as the heavens, before God made some order, and that it might, perhaps, be up to me to create a bit of light."

    You are such a beautiful writer. Really.

  12. As for me, I meant the kind of miracle you listed first- you created a moment of divine beauty and grace, perhaps for your family, certainly again here in the telling of it. Reading it as a person who has no experience with epilepsy, I wasn't sure if a seizure had been stopped at all. But I could feel the grace created by you and Oliver, around the dinner table, and instead of stopping there it extended through your words to us. So I stand by my comment. (like that's any surprise)

  13. That's really cool. I can definitely see that working. Thank you for sharing it.

    And like everybody else, I enjoy your writing so much.



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