The Boy is Finished with High School

I can hardly believe that my son Henry is finished with high school, graduated with honors and headed toward Gonzaga University in the fall. Good Lord. As they say, Where the hell did the time go? I am beyond proud of this young man and grateful for our relationship. He is charming and funny and joyful and intelligent, a tiny bit lazy which can also be interpreted as good-natured and has been the light of my life. And then there's his good looks. Good Lord.

I will miss him so much when he leaves us in late August, but I trust that our open and warm relationship will remain intact until he's an old man, and I'm a very old woman. That means I will always be right, of course, as well as wiser.

Here are some pictures from the weekend.

Henry and my mom at the Baccalaureate Mass

My dad, Henry and my mom at the Baccalaureate Mass

My dad and his mini-me

Mom, Me, Henry and Dad at the Baccalaureate Mass

Trivia: Do you know who that dashing young man is behind my father and Henry above? If you guess, I'll give you a prize. He's a classmate of Henry's, and it was quite thrilling to meet him and his family at the Baccalaureate Mass the night before graduation. During the "Peace Be With You" in the mass, I shook his hand. Hint: the arm attached to that hand pitches a 100 mph ball.

My friends Dorie and Johanna -- our three children went to preschool together and have remained friends through high school. It's been an honor and a privilege to watch them grow up, and damn -- I'm lucky in friendships.

The view from the bleachers

See Henry? We buy leis for our graduates -- I think it's the coolest tradition!

Bird's eye-view of Henry receiving his diploma from principal

The family (minus Sophie)

I love him a lot

Henry and his gorgeous girlfriend 

My dad, Henry and Uncle Tony (my father's twin brother)

I love this picture because they're not fighting

Me and my mom (we seem to have the same chin)

Post-graduation brunch

Cupcakes and peonies for our Taco Toast Graduate Party on Sunday

Saint Mirtha is also an incredible chef

It's a wrap.

Cannabis Oil Questions Answered

What do you think about the recently released study that GW Pharmaceuticals with 11 other epilepsy centers published yesterday about Epidiolex and Dravet Syndrome?


Enough people have highlighted and sent my way the "big" news that cannabis medicine helps children with Dravet syndrome, a particularly devastating type epilepsy. Dravet is what little Charlotte Figi has -- the Charlotte of the eponymous Charlotte's Web oil. You can look it up and find a lot of links, and evidently the story appeared on many television networks last night as well as in Canada.

Here's the link.

Yup.

Good news.

Raised eyebrows.

I'm not going to be doing any jumping up or down or anything, and it's hard not to yawn. It's even harder not to feel irritated, given all the goings on I've been privy to of late regarding The Powers That Be and cannabis medicine. It appears, to my tiny little mother mind™that the pharmaceutical company is looking to ram their drug through the FDA. But, hey, if their CBD drug helps some kid before that kid is subject to multiple drugs and other shit, then hallelujah.   

Hallelujah, too, for the families that can't afford the products out there already and for those who don't have access to cannabis because of the clusterfuck that is our government.

The train left the station years ago with many of us on board, and instead of grabbing our hands, most physicians and researchers chose to get on at a later stop. That's all right, I guess, unless they claim the whole thing for themselves.

My friend Chris said it best:

I know it's a step but it sure feels like an impossibly small step designed to benefit big pharma, which controls our country. It's jamming one piece of the plant into the western medicine paradigm, discounting those for whom massive doses of cbd don't help and actually harm and ignoring the medicinal value of the rest of it. I'm not holding my breath for a system that wants to control the product to allow for the individuation of mmj for each patient, which relies on individual observation and anecdotal evidence. That's not what the medical industrial complex does.

 Dr. Bonni Goldstein and two other doctors have also published a research paper that I find quite interesting, perhaps more interesting than the pharmaceutical company's one, because it references the extraordinarily wide dosage ranges of cannabis, as well as the fact that epilepsy patients might generally do better with access to a wider range of artisanal products rather than the single molecule compounds that pharmaceutical companies are developing.

Here's the link.

Veterans

The New Neurologist was great.* He spent nearly an hour with us, listening. He very much wanted to help us. He called us veterans. I watched him observe Sophie throughout, and even though he doesn't know her, I think he got her. I feel a new resolve to get to the bottom of things and figure out what might be causing these weird symptoms. The New Neurologist was pleased that the CBD is helping Sophie's seizures and puzzled over her deterioration. He might have some ideas. He seemed intellectually curious and kind. The New Neurologist wants to rule out some things and has ordered an MRI, a lumbar puncture and some blood tests. As loathe as I am to do tests, we haven't in more than a decade, so I'm putting aside my partially justified and partially insane doubts about the profession and letting go. Plus, he gave me his cell number on a sticky note and said he was available at any time if I needed anything. When I type that out, I feel a bit of a thrill at the words -- a sort of pick-up line for a mother starved for attention for her declining daughter. Gallows humor. My parents are helping me to purchase a bath lift system for our bathroom so that we don't continue the dangerous clusterf*^k that is bathing Sophie. This sort of thing is a kind of acceptance and it is difficult to do, and I think you know why. Acquiescence. 

Is there a difference between acceptance and resignation? Between surrender and acquiesce? We're all good here with words. You tell me.

Here's a poem:

Because Even the Word Obstacle is an Obstacle

Try to love everything that gets in your way:
The Chinese women in flowered bathing caps
murmuring together in Mandarin doing leg
exercises in your lane
while you execute thirty-six furious laps,
one for every item on your to-do list.
The heavy-bellied man who goes thrashing
through the water
like a horse with a harpoon stuck in its side and
whose breathless tsunamis rock you from your
course.
Teachers all. Learn to be small
and swim past obstacles like a minnow,
without grudges or memory. Dart
toward your goal, sperm to egg. Thinking,
Obstacle,
is another obstacle. Try to love the teenage girl
lounging against the ladder, showing off her new
tattoo:
Cette vie est la mienne, This life is mine,
in thick blue-black letters on her ivory instep.
Be glad she'll have that to look at the rest of her
life, and keep going. Swim by an uncle
in the lane next to yours who is teaching his
nephew
how to hold his breath underwater,
even though kids aren't supposed
to be in the pool at this hour. Someday,
years from now, this boy
who is kicking and flailing in the exact place
you want to touch and turn
may be a young man at a wedding on a boat,
raising his champagne glass in a toast
when a huge wave hits, washing everyone
overboard.
He'll come up coughing and spitting like he is
now,
but he'll come up like a cork,
alive. So your moment
of impatience must bow in service to the larger
story,
because if something is in your way, it is
going your way, the way
of all beings: toward darkness, toward light.

Alison Luterman
via Gratefulness.org

*For those who missed it, The Old Neurologist we've used for nearly four years lied to me about why she didn't want to discuss medical cannabis and Onfi interaction when Sophie was hospitalized two weeks ago. She claimed that she had received direct orders from her boss that she wasn't to discuss medical cannabis. It turned out that there was no such policy (at least officially, and I wouldn't be surprised if Pressure From Above was happening), and that she just didn't want to discuss medical cannabis with us. I don't trust The Neurologist now and certainly can't leave my daughter's care to her. When the profession's only use and power for your child over 22 years has been to write prescriptions for lethal and ultimately useless drugs, however well-intended, if you lie to me, I can't do it. I understand fear, and I've tolerated that. Transparency and good communication is as important as intellectual curiosity, and if you don't have either, I can't do it.

Hand-Outs

photo by Carl Jackson

Over the weekend I went with The Bird Photographer to Point Fermin near San Pedro to watch the peregrine falcons feed their fledglings. Like I said in a post I wrote for Cerebral Palsy Foundation last month, I wasn't aware of the incredible variety of birds that are among us nor their fascinating habits, until I started hanging with him.  The picture above is what's called an "aerial transfer" from the male to the female. That's a small bird, I believe, that the male has just caught. He heads back to the nest with that in his talons, the female flies out with not a little ruckus, he drops the prey in the air, and the female catches it mid-air and takes it back to the nest. It's insane except it's not. It's nature.

I don't feel like extending the metaphor, but I'm nothing if not an endless weaver of the metaphorical. Think precision, ruckus, prey, nourishment, nature, nurture, violence.

I'm struggling to deal with Sophie's new normal that might not be normal. She isn't having many seizures as the CBD seems to be really helping with those, but her general well-being isn't so great. I have no idea what's going on, and if I hadn't been doing this for so long, I would be up all night trying to figure it out. Figure it out. There's no figuring out, sometimes.

If something can be done about the situation, what need is there for dejection?And if nothing can be done about it, what use is there for being dejected?

Shantideva, 8th century Buddhist master 

It's weird to be conscious of and actually feel the enormity of the task at hand and the accompanying fatigue. I'm struck by how everything is the same, by how we're constantly learning and unlearning and re-learning.

The personal is political, isn't it? Isn't it?

I feel, still, great anxiety and even greater anger when I think about our government and the man we're supposed to call President. What a piece of shit. It looks like the country's "budget" will be balanced on the backs of the sick, the poor and the disabled. Hundreds of billions of dollars handed from one oligarchy to another so that the masses can build the weapons of war that will be used to destroy the masses in other countries. What a load of bullshit. I think it's safe to say that the funds Sophie receives from the government, procured through an aerial transfer that is much like the peregrines' pictured above, are not a sure thing. Whether the cuts come or not, the fact that they're argued about by those in power, the fact that we must continually justify them, fight for them,  beg for them is cause for a sort of irrevocable anxiety that ripples out of the body, my body and into the air.




Read THIS.














* Peregrine falcons are the fastest animals on the earth and can reach speeds of 240 mph. At one point, due to the effects of the chemical DDT, they were on the endangered species list. The entire American peregrine falcon population experienced drastic declines due to the widespread use of the pesticide. It caused their eggshells to weaken and break and led the babies to die before hatching.Thanks to the Endangered Species Act, their numbers have soared. (source is U.S. Fish and Wildlife Service). The Endangered Species Act is currently under the chopping block for the Trump Administration.

Their Shining Fills the Room

Ode to the Joyful Ones

That they walk, even stumble, among us is reason
to praise them, or protect them —even the sound
of a lead slug dropped on a lead plate, even that, for them,
is music. Because they bring laughter's
brief amnesia. Because they stand,
talking, taking pleasure in others,
with their hands on the shoulders of strangers
and the shoulders of each other.
Because you don't have to tell them to walk toward the light.
Because if there are two pork chops
they will serve you the better one.
Because they will give you the crutch off their backs.
Because when there are two of them together
their shining fills the room.
Because you don't have to tell them to walk toward the light.

Thomas Lux




Today is my Henry's last day of high school before finals next week, and I'm feeling overwhelmed with nostalgia. I read the poem this morning and thought it perfect to mark the day. Henry is one of the joyful ones and has been so since the day he was born. I've been sort of blocking the powerful emotions this milestone of moving to the next stage of his life brings, for obvious reasons. Today I'm going to praise him as one of the joyful ones. I hope that everyone out there who meets him will protect him.

What Does It Look Like When We Think?

We shall probably get nearest to the truth if we think of the conscious and personal psyche as resting upon the broad basis of an inherited and universal psychic disposition which is as such unconscious, and that our personal psyche bears the same relation to the collective psyche as the individual to society.

 Carl Jung

Your visions will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes.

Carl Jung 

This won't be pretty. I had a dream the night I brought Sophie back from the hospital last week. The dream came in the early hours of the morning, after I'd woken and fallen back to sleep. That's the time for the most vivid of dreams, in my experience, when I most hope to not just fall asleep but into lucidity. Lucid dreaming. There was something going on, and I was somewhere, with someone and then there was just shit. I imagine that got your attention because -- really -- who wants to hear about someone's dream? But the shit. What's that about? I'm telling you that that's what I dreamt. I love the word dreamt, that emphatic t. I dreamt of shit oozing out from under my fingernails. There's no other way I can write that, although I tried. This won't be pretty. I dreamt of shit oozing out from under my fingernails.  A dream for a therapist, you might be thinking. I thought so, too. I certainly wouldn't tell it here. What could be made of it? I had, after all, been in the shits with Sophie, had taken shit from The Neurologist, was sick of all the shit we'd been through. I was tired of shit. It was oozing out from under my fingernails. I am lucid. I am also connected to Sophie, and she is connected to me. How do you know what she needs? people ask. How does she communicate? or What does she know? I say maybe everything or maybe nothing. I know everything because I see what it looks like when she thinks. She's told me things or told me thinks with her eyes. I dreamt of shit oozing out from under my fingernails and thought about it for a few days and then stopped. How do I write this? I guess I just write this. Right this. Right, this. Seizures and benzos and inactivity cause constipation. This has been an ongoing problem for much of Sophie's life, but it pales, of course, in importance, to the seizures, to the other shit. Until it doesn't. Still, I can't write this. We relieved Sophie of her constipation, and the result was astounding. The literal shit was astounding. She is, like that, better. I don't even know what to say, but I do know what to think.

I'm a Tightrope Walker and a Non-Stop Talker

The other day -- actually the same day that the AHCA (Ass Hole Care Act) bill passed through the House, I had the privilege of talking to Abi Wurdeman on her SpareMin podcast. Abi had read my blog and contacted me to do one of these short and casual podcasts for Mother's Day week. She is a writer and podcaster living in Los Angeles who hosts interviews on SpareMin that center around human rights, feminism and diversity representation in the media.

Also a comedy writer, Abi was incredibly tolerant of my chattiness that day. Good Lord. When I listened to the podcast, I realized that my intense anger over the AHCA bill manifested as near babbling over the issues that I care about most. OK. Not near babbling -- babbling.

In any case, it was a fun interview that you might want to listen to if you have a spare minute or fifteen or need a diversion from all the crap hitting the fan today. Abi's got some other ones on there that are great listening, too.


""

Report from the Caregiver Chronicles

Sophie, March 1996
New York City

I took Sophie to the pediatrician this morning and spent two blessed hours with her. I say blessed because the pediatrician took care of us. She asked many questions, examined Sophie thoroughly and listened to me tell her what's been going down for the last couple of months. She assured me that we would work slowly and methodically together to rule out infection and virus being the source of some of this distress. We know for sure that there's no infection because all blood work, including cultures, came back negative, except for a slightly elevated white blood cell count. She agreed that the way The Neurologist treated me wasn't right and attributed the behavior as fear-based. She drew a parallel with how some of her patients are treated in the larger community when they choose to delay or forego vaccinations -- as being immoral or stupid or anti-Science. The Pediatrician understands these patients and their fears, is intellectually curious and has pledged to do no harm. She knows that I've been doing this thing for decades and know my daughter best. She made the point that pediatricians can be excellent diagnosticians because they are used to working from non-verbal cues. I watched her examining Sophie and realized that Sophie hasn't been truly "examined" with someone's literal hands, other than the osteopath's,  for -- well -- I can't remember. She is going to run a few viral tests and will get back to me later in the week. She suspects that Sophie might have had some kind of virus or might still have some kind of virus. She agreed that the medication interaction (CBD and Onfi) is worth further exploring and trusts that Dr. Bonni will continue to help me with this.

She supported my decision to take Sophie to a new neurologist -- someone whom I've known for nearly twenty years and who is now in private practice. I'm taking Sophie to see him next week and hope that he'll support us, too. In the meantime, this incredible weight on my shoulders has been lifted by her care, and I have hope that we'll get to the bottom of Sophie's decline. At the very least, I don't feel so terribly alone.

#GOPocrisy

I found this statement on social media and thought it interesting and important enough to put it up here.

I'd love for any of my conservative readers to respond. I know ya'll are out there. You can stay Anonymous, and I promise I won't argue with you. I'd just love to know what you really think or if you're thinking at all. Please answer the question and respond to what I've posted. I don't want to hear about what a crook Hillary is or was or what sorts of shenanigans Bill was accused of and for which he was impeached. I'm interested in your response to 45's shenanigans and gross misconduct. I want to know exactly what you want, how you believe and why you're supporting or refusing to acknowledge what's going on.

Civility is encouraged, although I don't censor language. Good people really do want to know why we find ourselves in this particularly weird reality.

Imagine this scenario:

Hillary Clinton is president. We learn that she has deep ties to Putin. She puts unqualified billionaires in cabinet posts. She puts her daughter Chelsea in a position of influence in the West Wing. Chelsea's husband is her chief advisor. She refuses to release any tax returns, she blocks access to the visitor logs in the White House, and Bill refuses to live in the White House so our tax dollars are spent keeping him safe in Chappaqua. Hillary spends almost every weekend lounging in a resort.

In an interview, she names the wrong country she bombed while bragging about the chocolate cake she was eating while she ordered said bombing. I could go on and on. The point is that the outrage, the outcries, the screaming by Republicans would be heard around the world and impeachment proceedings would already be underway.

By the way, this is not about political party affiliation at all.

Let's face it, if Hillary--or any woman candidate--had five children from three husbands she would never have survived the primary.

This is simply, #GOPocrisy.

Whatever Winter Did to Us

Jacaranda tree, no filter
Los Angeles, CA 2017

Instructions on Not Giving Up

More than the fuchsia funnels breaking out
of the crabapple tree, more than the neighbor's
almost obscene display of cherry limbs shoving
their cotton candy-colored blossoms to the slate
sky of Spring rains, it's the greening of the trees
that really gets to me. When all the shock of white
and taffy, the world's baubles and trinkets, leave
the pavement strewn with the confetti of aftermath,
the leaves come. Patient, plodding, a green skin
growing over whatever winter did to us, a return
to the strange idea of continuous living despite
the mess of us, the hurt, the empty. Fine then,
I'll take it, the tree seems to say, a new slick leaf
unfurling like a fist to an open palm, I'll take it all.

Ada Limon

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.

Three Comments, Plus

Sometimes I can't get out from under sorrow. An oppressive blanket that I just can't kick off. Otherwise, it lies under me, a mattress on which my strong straight back rests.

Silly metaphors.


I.

Anger first, then sorrow, my friend Mary texted me this morning.



II.

No rocket science, especially about the med community overall. Pharm feeds off and feeds it, now it wants the lion's share of a thing that sadly everyone else worked so hard to prove was the right thing all along. They will of course fuck it up, wrote my friend Ken in response to my most recent posts.



III.

The unwillingness to have a conversation is shocking to me. This is how our previous two docs functioned. They didn't want to hear anything from us and didn't entertain the thought that how the body functions or doesn't on the most basic biochemical levels might contribute to seizures. Or even tell us that they didn't believe that was an issue.

So my question to myself is why continue seeing neurologists at all? It seems to be the wrong tool for the job at this point, like going to an auto mechanic to treat cancer. But we're told that we have to because it's irresponsible not to have one. But is it? We've learned on our own how to wean as safely as possible. We've learned from experience that extra [drug] and not rescue benzos best stop her clusters. But I still worry, always worry, that as EVERYONE says, we can't go it alone because they're DOCTORS and they know things and we're not. But I'm not sure doctor means what people thinks it means at all. It sure as hell doesn't mean critical thinking or curious mind, wrote my friend Chris from across the country in an email I got this morning.



The gentle advice of my friend Moye, my sweet sister Jennifer's concern, the Bird Photographer's embrace, the raucous laughter of my friend Debra, and the arrival of Saint Mirtha conspire against the immediacy of sorrow. They, and the three comments that fell into my lap this morning, peeled the blanket back.

Thank them.

I am always trying to string moments together to make a strand that will last, something to hang around my neck, but I'm thinking that I must acknowledge moments as only moments. There's no end to the stringing, otherwise. So many sounds. Sorrow. Samsara. Surrender.

Sprung

I wore my pot socks this morning and sprang Sophie from the facility. We're home now.

I also had an intense conversation this afternoon with an administrative RN from The Neurologist's hospital regarding The Neurologist's statement to me yesterday that she was "under direct orders from her boss not to discuss cannabis medicine." I was lying on my bed recovering from the last couple of days and looking at my feet while "discussing" the issue with the administrative RN whom I will call Karen.

I want to record all of this in real time because the emotion that propels me to write is as essential as giving "thought" to it over time. In doing so I am attempting to break the hegemony of not just the neurology/medical/industrial complex but also of the patriarchy that would stifle emotions or otherwise lessen their validity. This has nothing to do with gender. Part of our power is due to our hearts, our emotions, to what is at stake. Quality of Life. Life. Death. Intellect and reason is another part, but not primary and certainly not dominant.

Break is hyperbole, of course, because at best I will make not even a crack.

Have ya'll ever seen the movie Michael Clayton? If you haven't, you should. If you have, I'm sure you remember Tilda Swinton's character -- Karen -- and Swinton's incredible performance. The administrative assistant I spoke with today used all the hems and haws that we in the cannabis community have heard over the years, and she did it so easily that at one point, I lost my composure and said, Karen! Do you hear yourself? You sound like a robot! I wiggled my marijuana toes and Tilda Swinton's Karen flashed through my mind. I imagined GW Pharmaceuticals to be a sort of Dostoyevskian Grand Inquisitor programming Karen in real time.

Things did not end well. I loudly object to doctors not feeling free to discuss their patients' medicine regimens. I believe, from experience, that the relationship between doctor and patient is sacred and should be one of mutual trust, and that in this instance, in this real time when we are on the frontier of revolutionary treatment for refractory epilepsy, complete transparency is incredibly important. That trust is broken for me, but I'm old. I've been doing this for so long that, frankly, other than the incredible panic I feel every now and then that we are truly on our own, I don't give a flying foo what hegemonic Powers That Be think. If they can't have a simple discussion about my daughter's medical cannabis, or even show a modicum of interest in her welfare, I can't trust them. I worry about young families who need far more guidance than I, and it depresses me that all the work we've done to bridge this enormous communication gap between physicians and families is completely ineffectual.

I will be writing some formal letters to The Powers That Be. I am joining with a few other members of our community in a concerted effort to object to what we saw, as well, on that video the other day where an esteemed neurologist directly told his colleagues to report parents using cannabis medicine on children to Child Protective Services.

There's something going on.

Like Michael Clayton says to Karen, For such a smart person, you really are lost.

Ever Since 45 Came On The Scene, Sophie Has Been Terrible*

So, yesterday we had a little emergency, and Sophie and I were transported to a local hospital via ambulance. I feel strangely lethargic and unwilling to go into it, but Sophie was admitted under the suspicion of aspiration pneumonia. The hospital is a small one, around the corner and down the road from my house in the big shitty, and getting there was a story all unto itself, but, again, I don't feel like telling it. I will tell you that the whole time I was traveling in the ambulance and answering the questions of the paramedic, I was paralyzed with anxiety about the cost (even though we have private insurance and secondary MediCal) and that's because of the shit that's going on in our so-called "government" and the recent passing of what I call the Ass Hole Care Act (you're an asshole if you concocted it, you're an asshole if you voted for the people who concocted it and you're an asshole if you go along with it and we're all assholes for living in a country and accepting the whole cockamamie shebang that is considered "healthcare" in this wealthy nation). I feel positively unhinged of late, as I know many of you do, so riding in an ambulance seemed par for the course for the times and all that jazz. Cliche.

Anywho.

There's Sophie looking straight at you. She is actually stable now and does NOT have aspiration pneumonia as far as we know. Her x-rays are clear, and blood work is normal. We still have to wait on the blood culture to come back, but I am not convinced that she is sick and have therefore declined antibiotics other than the couple of doses she got intravenously when we first suspected the aspiration pneumonia. Lots of readers here have medical backgrounds, and frankly, so do I.

I suspect that the problem is neurological and related to the benzo Onfi that I've been weaning very, very slowly. The problem is that Onfi causes "increased secretions" as a common side effect, and despite Sophie being on it for nine years (yes, nine years), when we wean a bit from her body, it's as if the side effects increase as we lower the level. Does that make sense? Also, there's this metabolism thing that's going on with Onfi and CBD that I'll go into in a tiny little mother mind™ way later.

Are you still with me?

We had to go to this small hospital in my neighborhood, as I said, because of a fire department/too crowded "good" hospital/Los Angeles traffic reason, and despite the lovely nursing there, the doctoring was -- well -- abysmal, and I just don't feel like complaining anymore. I'm done. I know that I have symptoms of PTSD, and that while this isn't my "fault" so much, it's inevitable that the course my brain takes when I get near hospital settings and, particularly, hospital doctors, is fight and flight. It takes all of my formidable strength to stay calm, to acknowledge the bonfires spreading in my tiny little mother mind™ and then think of ways to calm them in a kind of reverse kindling way. The thought crosses through that I am just plain crazy and that every one knows it, that somehow my reputation as a crazy, non-compliant mother who has no trust in The Powers That Be has made its way from the dark days of the last century at New York Hospital to Columbia Presbyterian to UCLA in the new millennium to Glendale Memorial to that doctor's private practice, to USC Keck and now to Olympic (or is it Olympia?) Medical Center and up the little elevator and into the plaid pocket of the Doctor Without a Lab Coat Who Entered The Room of My Daughter, Didn't Introduce Himself and Proceeded to Examine Her Superficially and Speak Pompously About a Subject That He Has No Idea About, And That Is My Daughter.

Here I am, swinging from the odd little chandelier that hung from the ceiling in our hospital room. My friend Kari can attest to the truth of the above doctor, as she was in the room with me. She also took the picture.

Which do you think is odder? Me or the placement of the chandelier or -- hell -- the chandelier itself in a hospital room?

Please discuss chandeliers and hospital decor, particularly COLORS.

So, Sophie is stable. I'm going to ask to be discharged tomorrow. I had a conversation on the telephone with The Neurologist (who's from a different hospital that doesn't have chandeliers in the room) that was shocking and disappointing. I was hoping that she would have a conversation with Dr. Goldstein, the doctor who helps me with all things CBD-related. She had some interesting words about metabolism and the interaction of Onfi and CBD. Dr. Goldstein spoke to me via phone last night at 11:00 because she is a doctor with extraordinary devotion to her patients. She is, quite literally, the only doctor who helps me in any way beyond throwing drugs at my daughter and flippant remarks to the atmosphere that surrounds me. I said to The Neurologist, I'd really love for you and Dr. Goldstein to talk about this CBD/Onfi stuff because I trust you both and think we can help Sophie if we're on the same page. Would that be okay?

Do you know what The Neurologist said?

This is what she said, No, I can't talk to her. I'm sorry, but I have strict orders from MY BOSS not to discuss anything about cannabis with my patients.

I'm going to let you stew over that remark for a bit.

Remember that The Neurologist is an excellent one that has treated Sophie for over four years. Remember that she works for a very, very good neurology department at one of the best hospitals in California, if not the country. Remember that she is perfectly aware of Sophie's CBD regimen and has duly taken notes when I've paid my quarterly visits to her. Remember that we have no other options for Sophie for seizure control other than the lame medical device called a Vagal Nerve Stimulator, that I will absolutely not try. Remember that she generally asks no questions about the cannabis other than to note the dosage or any changes that we make. Remember that she told me several years ago that "the party line is we need more research." Remember that GW Pharmaceuticals is working mighty hard to get a cannabis product called Epidiolex through the FDA. Remember that the neurology community is strangely taciturn, if not downright obstructionist and two-faced with their patients using cannabis. Remember that the Attorney General of the Disunited States of Amerikkka is adamantly opposed to even medical marijuana and has said that good people don't use it. Remember that Dr. Price, the Health and Human Services Secretary is adamantly against medical marijuana and as effusively positive about the Ass Hole Care Act. He even lied about the Medicaid block grant stuff. Remember my harrowing trip in the ambulance with my PTSD. Remember these things as you muse on a physician telling one of her patients' mother that she has been ordered by her boss not to talk about cannabis.

These people do not give a flying foo foo about us.



















I think you need another picture.

I'm asking for discharge tomorrow, and we're getting the hell out of Dodge.












*My friend Cara noticed that Sophie did great for the last four years of Obama's second term and that these troubles began exactly when 45 became the nominee. In fact, Sophie was in the hospital for the first time in years during one of those dreadful debates -- I think the one where he lurked behind Clinton like a predatory rapist. Remember? Between the Ass Hole Care Act shenanigans and now this bizarro development with the FBI director getting fired and everything that's flying around about constitutional crises and coups and still people defending the Asshole in Chief -- well -- I'm adding Sophie's troubles to the list. It's what 45 has wrought. If I can be so bold as to draw a parallel, to make the personal political, I think we have to be strong. Sophie is strong. I am strong. We are all strong people. We have to resist.

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Bolsa Chica Ecological Preserve

I put the post from yesterday in draft form because it feels polluted, almost. Not my language, actually, but what it's about. Not my anger, actually, but just all of it.  What happened yesterday -- both the concrete actions and the implications. I feel the weight of twenty-two years of fighting and advocating. I appreciate that many of my readers appreciate me giving voice to what they are feeling, but I'm sometimes tired of giving voice. I feel polluted -- not by anger or despair, which I believe are entirely justified, but by those people who think, believe and act in ways that defy every single value that I hold dear.

I could eat holes through them with words in a sluggish efficiency, a trail of slime.

I feel not a little despair over what's happening in our country regarding health care and a myriad of other issues. I feel not a little despair because it's impacting my family in untold ways -- impacting my relationship to members of my family whom I love and appreciate. I don't know what to do but sit with those feelings and take note, regard.

I'm thinking of Costa Rica. Oliver will graduate from high school in two years, and perhaps that will be the time to move there. Perhaps I'll be trapped here, struggling, forever. I'll sit with those thoughts as well, take note, regard.