Wednesday, January 25, 2017

Super Human Resistance

The only person in these parts who is super human is Sophie. She's basically arisen from a fast-declining, near-comatose state that lasted for a good six weeks or so. I think that I, along with The Powers That Be In Neurologyland, had a hand in her demise when we raised her benzodiazepine Onfi by about four times. I think she was profoundly over-medicated. As I've mentioned before, CBD can raise the levels of Onfi, so once I'd decided that she was over-medicated (with the help of her father and Dr. Bonni Goldstein, cannabis doctor extraordinaire) and lowered said medication, she began to emerge. I also brought her back to Dr. Joy Jin (Chinese doctor extraordinaire) who is giving her Chinese herbs and The Osteopath who is treating her overall well-being with regular visits. A week or so ago I also had an amazing experience with Sophie in my home which so blew my mind that I am hard put to talk, much less write about it. It was a "sound bath," and I know by even typing that out, I am going to sound like a crazy lady from LaLa land. Trust me. I don't do drugs, but I imagine what we experienced was similar in intensity and beauty without the side effects.

So, yes, arisen. Sophie has arisen like some kind of secular Lazarus.

Yesterday, we went to the dentist, a trip that I loathe, probably, more than any other aspect of caregiving. Sophie actually stayed still with only minimal restraint, opened and closed her mouth on command with a bit of cueing, and the new dentist talked to her the entire time she worked. She works with adults with disabilities and has trained to do so at UCLA, is probably about fourteen years old but is an angel, a true angel. She even made a little tool out of six or seven tongue depressors wrapped in gauze that she used to prop Sophie's mouth open. The usual tool is this metal clamp thing that resembles some kind of nineteenth century gynecological device and is so uncomfortable that Sophie generally thrashes and screams when it's placed in her mouth. The tongue depressor contraption worked perfectly because Sophie likes to bite on things, and she could do so even as the dentist worked on cleaning her teeth.

Again, arisen. Sophie has arisen like some kind of secular Lazarus. With help.

She's AWAKE.

The other thing I wanted to say here is that I wake up every morning in a state of dread. I know ya'll do, too, and I know most of you want to not only resist the clusterfuck that is our current government but stay alive while doing so. This morning as I did my usual morning things, I thought about being in it for the long haul. I realized that I've been in it for the long haul as a caregiver. I've watched my child seize tens of thousands of times, an experience that some people have only once if at all. It never gets easier, but I'm still here. Sophie, despite having tens of thousands of seizures, is still here. I'm taking cues from Sophie. She's a resister. I can be a resister. You can be one, too.

In addition to caregiving and seizures, though, or despite it and them, is a life filled with family and friendships and reading literature and poetry. There's making love and writing and laughing and drinking and eating good food. There's going to the movies and bird-watching. There's taking care of my garden and beautiful house. There's meditating and thinking and allowing my rich imagination to flourish. In between having seizures and convalescing for Sophie there's music and walking outside, there's looking up at trees and out to the horizon at the edge of the ocean. There's eating and watching and drinking and swinging and taking baths. There's being held tight by brothers and a mother and a father. There are things to chew on and mermaids. There's a purple room.

What's my point? We can't keep up this resistance without help and without acknowledging the other parts of our lives. I read an article today that I thought I'd share here. It's called How To #StayOutraged Without Losing Your Mind by Mirah Curzer. Thank you, Mirah! One suggestion , among several, is that we pick one or two things to concentrate on. I'm picking healthcare and disability-related issues,particularly for the disadvantaged and minorities.

What are y'all going to do?



  1. All I can say today is that I am so happy for Sophie and for you. She IS amazing. And she absolutely has the best mother/advocate that anyone in this world could have.
    Hello, girl! Welcome back!

  2. I love you. Thanks for sharing that very useful article. I'm picking the environment and civil rights. Big issues I know. Specifically anti DAPL and women's reproductive rights.

  3. Oh, this post. It is a balm for my soul. I have bee reading your posts and not commenting because I have nothing. Nothing. I am so very glad that Sophie is doing well. I am so glad that you are coming to a place of peace.

    What am I doing? I can't do much. I continue to talk daily about my beliefs that medical care should be free, or very, very low premium as a basic human right. Up here in Canada we have politicians that want to do away with it. I will defend to the death my belief to uphold what we have. My hope is one day you will see that where you live. I will continue to defend the rights of the most vulnerable.

    Much love to you and your family.

    1. I'm writing on my iPad. Excuse the typos.

  4. Sophie is a teacher to us all. Determination and resilience. (and it goes without saying, you are too) I'm committing to marching whenever there is one (and maybe I'll organize one as well). I am committing to supporting the rights of immigrants. Our Islamic center in Davis was vandalized a few days ago. I am participating in an rally to support them.

  5. I don't know how anyone could come here and fail to be moved by the fierceness and bravery and love and poetry that is in these pages. Why are people put off by outrage and anger? I suppose if Trump is teaching anything it's how to see only what you want to see.

    I'm so glad Sophie is feeling better and being herself again.

  6. Sophie is beautiful!! I'm picking your two causes plus education. The Groper-in-Chief has threatened to send the "feds" into Chicago. What Chicago needs is education and jobs to give some hope to those with none who are committing these crimes.


  7. Elizabeth, thank you for this beautiful post. I am thrilled to hear about Sophie and how things are better with her. I'm thrilled to have your friendship and wise words.
    I'm going to concentrate on Reproductive Rights, and being a Black Lives Matter and LGBT ally.

  8. This was good. Also beautiful. Also I cried a little when you wrote about the "sound bath," even though I don't know what that is - because it sounds like it was a really wonderful gift that you and Sophie shared - and I'm grateful for that, for both of you.

  9. Fantastic post. Sophie looks beautiful and peaceful and gently amused. Thank you, too, for that article.

  10. This is beautiful. I too have seen my brother seize a thousand times. I think about how we can only focus on one or two important things at a time. But it all adds up. Thank you for your writing. As a sister to a brother with multiple disabilities, as a daughter to a mother whose life was radically altered because of my brother your words are salve.

  11. I'm so glad to hear about Sophie being on the mend. Seeing her beautiful face made my day. I'm focused on healthcare and that's what I know for sure.

  12. I am so glad that Sophie's better. Her resilience and yours gives me a bit of strength. I am focused on health care and disability, both endangered these days, more than ever in my lifetime. But I get distracted by so many other causes with the heart wrenching situations and the outrageousness of all of this. I have a lot of anger. The Standing Rock cause caught my attention last night and I went to join a group to protest. I won't get used to Trump or inured to his lies.

  13. I'm glad Sophie is back. She's a tough young woman, takes after her mother I'm thinking:)

    I am sickened by Donald Trump, with each day getting worse. And it's only be five days. American has to do something to fix this before the rest of the world gets dragged into his narcissistic nightmare.

  14. so happy Sophie is awake again - resilience!

  15. I am so glad Sophie has emerged!

    Resistance is important, as is (for me) perspective and coping. I need to keep in mind what I can do and what I can't. It's not a matter of giving up, it's a matter of staying sane!

  16. I'm so Happy to hear that Sophie has emerged and that you are balancing the strains of Caregiving with Positive thoughts about what in your Life is Wonderful... it always helps immensely. And that Photo of her is just a Beautiful candid shot... she looks so pensive in the moment. Blessings from the Arizona Desert... Dawn... The Bohemian

  17. Amazing post. That is one tough cookie you have there as a daughter. And you're right, we all need to learn from Sophie. Resist! Thanks.

    Greetings from London.



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