Friday, August 24, 2018

Everything Connects Us to Everything Else

so said Leonardo da Vinci, and he wasn’t kidding.

The Neurologist called last night, after I’d posted (scroll down for yesterday’s post) and confirmed what I’d suspected, that Sophie is having another occurrence of ESES. My instincts were correct, I was right, Sophie’s “decline” is due to that and she will be treated with Intravenous Immunoglobulin — infusions — and hopefully it will be resolved. The Neurologist was sorry, and I am not angry with him at this point. Yes, he should have read the report two months ago, so Sophie could get treated. All of it, every single bit of it, is emblematic of — well —  everything in our world from diagnosis to medical education to our notions of what it means to be human to the commodification of healthcare to inequality to current politics to the differences in the notions of curing and healing to perspective and privilege and grief and grace. As for anger, I  have little space in my heart and brain for that today. Maybe later. Maybe in my next life when I come back as a stoned woman in an azure bikini and surf all day long and love the Bird Photographer and read poetry all night. So, maybe never. The Neurologist is incredibly supportive of our use of cannabis, and that is everything. I’m not in the mood to tell you about ESES today — if you’re interested, you can look it up on the internets. There’s very little known or understood about it, so you won’t be overwhelmed with information. You might wonder why cannabis doesn’t protect her from this bizarre epileptiform activity, and so do I. I do believe, with The Neurologist and Dr.Goldstein, that Sophie is having the least amount of actual clinical seizures in her life. During her last two bouts with ESES, she was having up to 7 giant tonic clonic seizures a day and hundreds of myoclonic ones.

I freaked out last night, had an hour or so of the past 24 years collected in my body brought to the surface, and it was Henry my son of twenty years who comforted me. Rather, we comforted one another. I’m so sorry, I told him. I’m so sorry for all of this. Henry, lying beside me, said, it’s okay, Mom! It’s made us who we are. Which is so good.


  1. And your instincts are almost always right. I say "almost" because I haven't known you forever but so far, since I HAVE known you they have been.
    I love Henry. He is right.

  2. I am in PT and crying from this. They think it’s physical pain. I feel a bit of anguish at reading this. Does Sophie ever get a break from discomfort! Do you? My heart breaks wide open at this. And you should get paid drs fees too...

  3. Always reading always astonished by you. Today I am considering that incredible portrait of the dark angel that surfaces in you. Lace shadows and fire. It captures your essence.

  4. What Henry said to you brought tears to my eyes. So sorry for all of this in your life as well, but glad you all are who you are. Sending hugs. x0x0 N2

  5. I am so sorry it is so hard Elizabeth.

  6. Crying. Dear, dear Henry. Dear, dear all of you. 💜💓💜

  7. The human body and mind can only stand so much. Henry has learned so much from you about being there for another person in the most difficult of circumstances. Continuing to send love to you and your good family.

  8. What Henry said was perfect and true. In awe.

  9. Oh gods, thank you for Henry!

    It really is such a battle, one the one hand, doctors want patients and caregivers to be educated and involved, on the other hand, they belittle - more often than not - any notions patients and caregivers may have of their state of health or illhealth as if we are just a bunch of idiots who could never understand the real science behind it.
    For crying out loud, Elizabeth, you know more about Sophie than any "expert" who briefly (in comparison) looks at her and her files from time to time ever will.

  10. It is chilling, the similar trajectory of our lives, (elite) soldier sister. I do not believe in coincidence. I can relate to your highly in-tuned medical intuition, the steeliness of your advocates sword, your rage against the absurd, your need to stop for a single second so you can just FEEL, and allow yourself to be weak, vulnerable, feminine. And you know that no matter how much you write, scream, blog or shout, few folks in this world will ever have the capacity to fully understand.
    I had to chuckle too since Henry is a lot like Weston, connected to the Universe in a very natural way (they are the Magicians in the Tarot) with a direct line to spirit. They are like receivers (a telephone, so to speak) What he said to you.....was significant.
    I will drop you an email, we definitely need to chat.

  11. Henry's words have such depth. I'm so sorry to hear you're going thru such an incredibly difficult time, but glad your Mother's instincts kicked in... we always know, we're not always Heard though.



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