Sunday, November 5, 2017

Update from the Cloister

See enough and write it down

Joan Didion

Can I tell you who Sophie is and how I know? Can I tell you that she looks directly at me, her eyes dark pools her life behind them something vast even as it is cloistered? She loves the way trees blow in the wind the feel of beads slipping through her fingers like water and water, the ebb and flow of ocean tide. These days, even as she struggles to move, her left leg dragging, her eyes are as piercing as they've ever been. What is that?

Here's the plan: Wean the Onfi. She is over-medicated with it, the drug that I suspect is the culprit in her decline. Order The Ashton Manual (thank you Christy!) Play with the CBD oil and add in a bit of THC.  Be grateful for the grace of friends, for mindfulness meditation, for love and resilience and the strength of the heart. 

Onfi needs another name, a moniker of dread and dependency. I took away a small bit nearly two weeks ago, and this weekend was an extraordinary one. Sophie ate well, swallowed well, reached for her cup and drank well. She walked down the street with me and always her gaze -- her clear and resolute gaze. No seizures.


  1. She is blessed to have you as her momma bear. Katie is doing well on her cannabis. We have decided to reduce one of her antipsychotics as she is having symptoms of tardive dyskinesia.

    I remember listening to Joan Didion on the radio one day explaining how and why she writes. She said she often doesn't know what she is thinking until she writes it down. That is me. Writing is how I collect my thoughts.

    Sending hugs.

  2. Good news is good. I'm happy for your and Sophie's good weekend.


  3. She is in there, you are her mother. She is in there, you catch her light and return it. She is in there, you hold her soul in your own eyes which are her eyes, which are the deep pools of heaven and beautiful.

  4. I'm glad to hear there seems to be some progress. Sophie is so fortunate to have you!

  5. Glad for good days. Glad that you are in this world. Love to you both.

  6. That photo says so much.
    The Annunciation - announcing to Mary that she was to be bestowed with the birth of her baby. Your keyboard, where you write down the more than enough that you see.
    The key that opens the door, to what? Answers?
    Buddha, grasping your hand.
    And your beautiful hand, carrying all of this.

    You don't even need words, Elizabeth. Once glance tells the story.
    Dearest, Elizabeth

  7. Sending you love, Elizabeth. For the countless times your mother heart has been broken and been put back together. xo

    PS - they nailed the 80’s feel on Stranger Things!

  8. Wise choice, weaning from harmful drug 'treatments' is difficult and painfully slow but it can be achieved. We have three Family Members that have achieved it and they are the better for it and utilizing Holistic Treatments that are Kinder to the Body and Mind.

  9. This is such great news about Sophie. You must be on the right track with the Onfi weaning.

    I would love to hear how you tweak the CBD and THC dosing. We haven't been giving any THC on a regular basis; only in cases of strings of seizures when it has proven to zap them. Oddly, no doctor here recommends giving THC at all for epilepsy (only CBD). They dismiss our experience with it as "just anecdotal".

    Hoping Sophie continues to improve...

  10. Oh my God, Elizabeth. You know. You just know, and then you have the courage to act on your knowledge. Love love love to you and to Sophie.

  11. Honored to be a witness to the beauty and the sorrow that you share.

  12. I so trust your gut, it always knows. This is wonderful news.



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