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.

The Urine Wheel

Medieval diagnostic tool: The Urine Wheel

I don't even know how to write about what I'm going to write. I don't even know where to start. The last couple of days I've been thinking so much about a story that involves a little girl with seizures, her parents and a doctor that I used to work with about ten years ago. The doctor is accused of medical kidnapping, and despite that inflammatory phrase, I am not surprised. Here's the thing. I worked as the Parent Chair on a national collaborative about ten years ago. The collaborative was funded by the federal government and implemented through the non-profit foundation National Institute for Children's Healthcare Quality. Our mission was to collaborate with teams from all over the country to improve the quality of healthcare for children with epilepsy and their families. Part of the initiative was to encourage and, in fact, demand that parents and families play an equal role in the improvement efforts, and my job as co-chair was to help implement that. My feeling then was that the state of healthcare quality for our children with epilepsy was abysmal, and there was nowhere to go but up regarding communication between families and the professional world. I was honored to work for NICHQ, and their efforts to include families were (and continue to be) near-revolutionary. The faculty also included a top neurologist from Wisconsin. Her name was Dr. Zupanc, and because this is a public blog, suffice it to say that I found her to be one of the most arrogant, patronizing doctors that I'd ever met -- I'd go so far as to say that she was as bad as they get. Whenever she spoke, I stuck my fingers in my ears in my tiny little mother mind and attempted to forge ahead. When I paid a site visit to her epilepsy center in Wisconsin, I was impressed by the sheer beauty of the place and understood that this doctor was capable of commanding vast sums of money to be invested in epilepsy -- an explanation, perhaps, for certain communication and "bedside manner" deficits.

In the years that followed, I heard stories from people who would become my friends, stories of how badly they were treated by Dr. Z (as we came to call her), how she bullied parents into adding more drugs to cocktails that weren't working, encouraged and demanded radical brain surgeries, dismissed concerns, turned on mothers near-maniacally. When she transferred to Orange County a few years ago, I cringed, particularly when I read all the accolades about her.

Fast forward ten years to the Cannabis Revolution in Epilepsy, the revolution that we've helped to pioneer. Who is one of the most vocal opponents? Who is the doctor who has called California Protective Services to report several families that I actually know? You guessed it. So, here's the story, and despite the sensational title, it's been corroborated:

CPS Threatens to Kidnap 7-Year Old in California

If you're on Facebook, you can read updates on the family's page:

Pray for Kennedy May

One of my favorite, albeit controversial bloggers, Levi Quackenboss, has a great post about the whole shebang, too:

Calling for a Medical Kidnapping Smackdown



When I first read about this story, I confess to just raising my eyebrows. You hear a lot of crazy shit from very crazy people in the alternative medicine world, and I've written before about all the interesting people with whom I share a bed now. There's lots of conspiracy theories, too, and I'm hesitant to embrace all of  them. This is different. I've witnessed the type mentality of and have first-hand experience with those physicians whose obduracy about parents' involvement in their children's medical care beggars belief. I'll only qualify that by stating that Sophie's neurologists are beloved, always work with us in professional ways and have been nothing but supportive. The few that weren't I shed, quickly. That being said, I have several friends in this cannabis community that have corroborated the details of this story, and while I hesitated to get involved because it all makes me very, very nervous, I think it's important enough to show my support.

I wish this child and her parents continued strength and courage and hope that they feel the many folks out here at their backs.

"Home is a Medicine Unto Itself"

Gustav Klimt

“The wind blew my eyes off my face and I caught them in my hand,” my son declared, pointing to his pre-school art project. The assignment was to glue a hat, pants, shirt, mouth and eyes where they belong on a pre-drawn outline of a human body. The hat was where you would expect it, as were the mouth, shirt and pants. But both eyes were glued to the left hand.

“Wow, that’s poetic!” I replied, and wrote down the quote at the bottom of the paper with his age, “2 and a half.” Then I taped the masterpiece to his bedroom wall.

A week later he had a seizure, which turned out to be the first symptom of autoimmune encephalitis.

an excerpt from Sandra Stein's essay, Home is a Medicine Unto Itself

in The Atlantic

One of the abiding positive effects of blogging is the friends I've made, the intense relationships that have developed despite geographic distance. I met Sandra several years ago online when she contacted me after reading my blog, and in the years that followed we've exchanged emails, texts and telephone calls, sharing much of our lives, our hopes, our tribulations and dark senses of humor. Sandra's article in The Atlantic is so beautifully written, and her story -- her son's story -- is one that will take your breath away, as it took mine.

Home is a Medicine Unto Itself