Wednesday, January 4, 2017

This Is It




It's been a week, dear people, since I've updated the old blog. Since then, I've seen tens of thousands of migratory monarch butterflies clustered in a eucalyptus grove in Pismo Beach. I hung over a fence overlooking a narrow beach and the gleaming Pacific, watched fighting male elephant seals, mating elephant seals and brand-spanking new baby elephant seals near Cambria. I stood and watched with tears in my eyes as the sun sank below the horizon and threw the most incredible blues and pinks and oranges into the California sky. You should come out here and witness a California winter sunset. Trust me. I'll post pictures of the mini-getaway at some point, but you can also follow me on Instagram or even Facebook, if you don't already. I post a lot of photos there.

Here it is 2017, and I neglected to wish you Happy New Year's Day.

Happy New Year's Day!

I wanted to write but felt reluctant to share those glories without also sharing what seems to be an ongoing thing with Sophie. I keep hoping for things to get better, but they are not. I'm not sure what's going on. Sophie is not sick. She is not having more seizures than usual. She is just generally drained of vitality. I honestly don't know what to do and it's been my experience that when I don't know what to do, it's best to wait with an open heart and mind for direction. This does not mean that I am avoiding wise counsel -- that of doctors and otherwise -- but it does mean that counsel can come from unexpected places and that I have to get out of my own way to receive it. Does that make sense?

It's a weird thing to wonder if this is it. If my anger were a crow it would be circling round the neighborhood making a ruckus with its kind. Looking for trouble. It's going to piss me off if I have to actually watch Sophie decline. A murder of crows.

I'm tired of this. It.

Dr. Jin came to the house yesterday morning to treat Sophie. Dr. Jin is our Chinese doctor who we've consulted since I was pregnant with Oliver, sixteen years ago. I haven't talked to her in a year or so, and her name came into my mind when I was meditating one morning. She made a house call. She took off her boots outside of Sophie's room, tiptoed in and sat on the edge of her bed. She spoke softly to Sophie and to me, examined her tongue and felt her pulse. She treated her with needles and discussed some tonic herbs that we might try. She insisted that Sophie will get better and that she will help to bring her back into balance. I believe her. She reminds me without saying anything in particular that all I need to do is take care of Sophie. She reminds me of the honor it is to take care of Sophie, to take care of a fellow human being.

I am struck by the great disparity between the western medical world as I specifically know and perceive it and the healing that Dr. Jin brought to the house. I have a $150,000 EOB lying on my desk from the last time that I brought Sophie to the hospital to be treated. Most of that absurd amount will be paid for by private insurance and secondary Medi-Cal. We will not be bankrupted by that absurd amount of money, the services rendered arbitrarily priced by the faceless. As I type these words, the politicians of the Disunited States are debating the repeal of the Affordable Care Act which, if not exactly perfect, brought great peace of mind to our household at least in regard to finances. Healthcare should be affordable and accessible to all human beings in a civilized, wealthy nation. I believe it's a right. It's not, though. It's not even about healing, to tell you the truth. It's a business, another commodity for the rapacious capitalists to pick apart. I'm not sure the capitalists realize that the effect is deeply psychological. I'm sure they don't care.

I'm tired of this. It.





My son Henry got a tattoo yesterday. He's been bugging me about it for months. I told him that at 18 years, he's too young, that he might regret what he puts on his skin. In October he came to visit Sophie when she was in the hospital, hooked up to an EEG. He's the silent type. He peered at the video monitor and said, That's what I want for a tattoo.  We took a still photo of the screen, as angry as it looked. He didn't relent, and I finally caved. Yesterday, we drove to Flying Panther Tattoo in San Diego where I got my mermaid a year ago. Allison is a goddess mother/healer whom I met in the epilepsy/cannabis world. Her husband Rob is the artist, and he tattooed Sophie's brain waves onto her brother Henry's arm. #radicalspecialneedssiblinglove.

I am still reeling from it.

It.





THIS is it.

42 comments:

  1. I have been a writer and very verbal since I could speak and at this juncture, for this country and its ills, and the depth of fear I have as a disabled woman, words, for the first time, are not sufficient. I feel for you and others, and for the first time, I'm frightened to be here. Not a happy note upon which to begin a New Year but there you have it.

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  2. This is an extraordinary post of so many levels, Dr. Jin's gentle care, your aching open hearted wait for guidance, the honor and privilege of taking care of Sophie, I am still taking it all in. But Henry's tattoo. I am gobsmacked. This is love. All of this, is love.

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  3. I can't possibly express this better than Angela did. Henry is my idol.
    Xoxo
    Barbara

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  4. It has been difficult to write. I am glad you have had such beauty in the midst of IT. Sending Sophie and you and your boys love from the north Pacific coast.

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  5. So glad of your travels through all that beauty. And the beauty of your children. You are traveling through that too. And IT. IT is a trip--in and of itself. Blessings on your household for 2017.

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  6. So much here. Being sick of it. And the beauty around you. Your words today have gotten me.

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  7. Wow Elizabeth. Always, you make me hold my breath and then float.

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  8. Listen, every time I see the picture of Henry looking at his tattoo on his arm I get tears in my eyes. It's just so full of love.

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  9. Yes. This is it. I am reminded of the conversation I had with someone the other day who was absolutely driven to his knees by grief. I told him I would hold space for him, that I understood, that the most amazing and the cruelest thing is that such seemingly bottomless pain can simultaneously coexist with the most wondrous, the most exquisitely beautiful things. That sometimes it all seems too much to hold. And that is when we rely on each other to expand the space for us, and sometimes, when things like Henry's determination to get the tattoo are told to us, we are given more room to breathe. Thank you. Thank you for holding all that you hold and for living in your skin each and every damn day. It gives me hope and room to breathe. Love.

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  10. I'm thinking Dr. Jin is right Elizabeth. Sophie will recover from whatever IT is. The hospital bill is absurd. I'm guessing Michael's bills for the last year are well over half a million. But that's us and I'm going to raise holy hell one day in MY blog. Back to you, your wondrous boys and your beautiful Sophie. You are foremost in my most loving, healing thoughts.

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  11. What a fabulous tattoo – bravo, Henry (and the family that raised him)!

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  12. Beautiful. I like that Dr. Jin. What a wonderful son you have. What a wonderful family you are raising. And yes, it is an honor to care of our kids (though it's also terribly sad at times).
    I'm sending love to you all. xoxo

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  13. I only find healing in the sacred. I'm so glad she came to tend Sophie in whispers and that we could reel with you and your rad family over Henry's tattoo. He learned it from YOU!! xoxo

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  14. I just don't know what to say, except that you are a wonderful writer. Bravo to Henry for the tattoo, for making his love for Sophie a visible part of himself.

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  15. Wishing Sophie healing. You are all remarkable people.

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  16. Oh Henry! Such a wonderful bond.

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  17. It never ends does it? I'm watching Katie get old before my eyes. She's only 24 and she's aging faster than her siblings.

    I hope Sophie's body and mind are able to find a stable balance again. It's not easy but she has the perfect mother for her. Take care woman.

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  18. As so often happens when I read your words, I find myself lacking them. You have written here of LIFE. This is, indeed, it. Thank you for allowing us to witness the sacredness, through your words. Much love, always.

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  20. Excellent anecdote about Western vs. Eastern medicine! And, an amazing choice for a tattoo! All three of my kids have fairly small, tolerable, mostly hidden tatts. The first one was my daughter who wanted "Peace" in script, now how can I object to that??!! Eastern and Western healing prayers for Sophie to come out of her funk, maybe she's been watching the news??!!

    Also, if you could remind me (us) of your Instagram and Facebook account names I'd like to check those out too.

    THANKS

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  21. When I came to Henry's tattoo, words left me.

    Best,
    Bonnie

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  22. P.S. I am beyond grateful for my doctor of Chinese medicine, who is over 70 years old and still practicing. He is wise and so dedicated to his patients. I owe a great deal of my quality of life to his skill and compassion.

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  23. This Post Moved me to tears... the Pain and the Radical Sibling Love that the Tattoo represents... Thank You for Sharing such an intimate Story of Challenges and Great Love... Hugs... Happy New Year... Dawn... The Bohemian

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  24. Wow. All the way around, wow. From sunsets to fear, to care to love.

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  25. Your son dazzles me. That is an incredibly beautiful choice.

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  26. love to you and your wonderful kids

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  27. I can't understand why the US can't embrace a system similar to our NHS here in the UK Last year I was hospitalised for 7 weeks, but we didn't have to pay a penny. Over Christmas and New Year I have had flu and pleurisy, but over that time I have had antibiotics and other treatment plus 7 home visits by doctors. Again at no charge. I paid into the National Health Scheme all my working life. It was taken from my wages along with my income tax, so I never missed it. Now I get free medical treatment, doctors' visits, free dentistry. eye tests, spectacles, and just about everything else you can think of. I know a lot of people in the UK moan about the failings of the NHS, but believe me, I would be devastated to live in the US with your 'so-called' health care

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  28. I have never felt so well cared for as I do when treated by an LAC. So healing on all levels. Puts me back into my body and lets me just "be." So glad that Sophie can get these treatments. Maybe you'd benefit right now, too! Very interesting that the notion came to you during your meditation. That's the magical mystery of the universe.

    Henry's tattoo is a miracle....what love. I've never had one because I just couldn't pick an image that suited me. If it ever comes to me, I'll know.

    I wish you and your family some damned peace! It's being in limbo that is so very challenging. Keep on doing what you're doing. The good, the ugly, the sublime. It's all there.

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  29. Happy New Year to you and your lovely children, Elizabeth!

    I beg your forgiveness in advance for any lack of tact in this comment. Actually I have never been known to have any :(

    I totally agree with you that counsel can come from unexpected places and that one (or one's emotions) has to get out of one's way to receive it, see it, hear it, recognize it. If you read the comments of this post with an open heart and mind, you'll see that you have already been given some very wise "directions".

    What Allison Ray Benavides said about finding healing in sacredness resonates with me personally.

    When you get better, your situation will get better. Not the other way around.

    Henry's love for her sister is pretty apparent.

    Peace, Love, Be...

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  30. That tattoo! You couldn't have said no. Some things are just so perfect and right.

    I have to make an change to something you said.

    "Healthcare should be free and accessible to all human beings."

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  31. The thing that has always struck me about your boys is not just the love they have for Sophie, but also the respect. That's not always an accompaniment to love. I admire that greatly.

    You sound as if you are floating, with just the slightest tether to something solid. My heart breaks for that, for the fear, frustration and anxiety that obviously comes with it, although as always you handle it with a connection to something you maybe don't see right now. I hope for a calmness for you as you wait and a lifting of spirits for Sophie. Bless Dr. Jin and don't forget the I Ching, it's helped you before.
    Love to you all.

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  32. Trusting that the uni-verse will continue holding each of you, I send you my hopeful thoughts.

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  33. Sometimes for me a sign is enough, the bridge to another day. Henry's tattoo, his unyielding insistence on getting it, meaning and symbol, indelible. We think we know how tiny the steps need to be, how minute the units of measure. We've had it wrong. There is no gauge too small for the increments of hope. Perhaps we make it up out of nothing, but it doing so it becomes so much more. It becomes. Dr. Jin sounds like a mythical creature, one I might think I imagined. Sending love, always. xo

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  34. Henry. Sophie will always be with him, tucked under his arm, next to his heart. What a splendid thing.

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  35. What a truly beautiful brother. Bless him, and all of you special people.
    May each day bring healing, even more love, support and strength for you all.
    Thank you for sharing. An inspiration for all of us to keep what we think are our challenges in perspective.
    Lynda, N.Z.

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  36. I'm not at all into tattoos and even my most rebellious children haven't gotten any but this is such a moving gesture of Henry's deep love and caring for Sophie that it has altered my tattoo negativism.
    P.S. I know how demoralizing those setbacks are - I hope Sophie's latest one is finally making its exit.

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  37. This is so beautiful, and I hope healing in all its forms, to all your family, is barreling towards you right now.

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