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.

No Title

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.

The Tiny Little Mother Mind™ Reports

First of all, I'm going to ask you to view the following video, if you can.


https://www.facebook.com/DavidGeffenSchoolofMedicineUCLA/videos/1277904508994589/ 

If you can't see it, let me tell you what it's about.

Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA School of Medicine is a leading expert in the hard to control epilepsy syndromes category. That would include children who suffer from refractory seizures -- the seizures that medication does not help. Sophie was diagnosed with infantile spasms, one of the catastrophic epilepsies, when she was less than three months old. Dr. Hussain was probably in high school when I began injecting Sophie's thighs and arms with high-dosage intravenous steroids and then her first benzodiazepine which was, in the dark days of the waning twentieth century (1995), not approved for use in the United States. The drug was called nitrazepam, and it was given to me in a process called "compassionate protocol," a phrase that I can only throw my head back and laugh a long and bitter laugh over, today. 

Today. April 27th, 2017.

Today, when children are diagnosed with infantile spasms, they are still treated with much the same protocol, even though that protocol is not effective. Yes, new drugs have been developed and approved, imaging is more powerful and surgical intervention is more prevalent and sophisticated, but treatment is still not entirely effective, and a diagnosis of infantile spasms remains one of the most devastating pediatric epilepsies. Not a week goes by that I don't read about, receive an email from, a telephone call or a referral from someone whose child had infantile spasms, has infantile spasms or another epilepsy syndrome and who is struggling with constant seizures despite multiple drugs, often in combinations of three and four -- drugs with hideous side effects.

As most of you readers here know, over the next nineteen years after her diagnosis, Sophie was given twenty more drugs in various combinations, many of which were not approved for use in the United States, were only newly approved and little studied or not approved for use in children. I can honestly say that at a certain point, these drugs were prescribed in a way that I can only compare to a primitive crap shoot -- that the series of neurologists who prescribed them would often compare the situation to throwing darts, and that one or two of them openly admitted that they just didn't know how the drugs worked, why they didn't work and what to do, really, about Sophie. Sophie is not alone in this experience. Children like her are legion. When she was nineteen years old, I learned about The Realm of Caring* and the Stanley Brothers and put Sophie's name on a waiting list to try their high CBD oil. We began to give her cannabis oil called Charlotte's Web in late 2013, and her seizures stopped for the first time in her life for a period of weeks. In the nearly four years since, we have weaned her completely from one drug and are slowly weaning her from the benzodiazepine clobazam (Onfi) that she's been on for nine years, a drug so vicious that we might never be able to get her off of it, such is her dependency and the damage it's wrought on her brain. While she is not seizure-free, and there have been periods of great struggle, we achieve long periods of seizure freedom through careful tinkering with dosages and strains, the addition of THC and careful monitoring. Her quality of life -- and our family's -- is vastly better.

But this isn't about me.

The video. 

Dr. Shaun Hussain is leading the cannabidiol studies at UCLA and thus has ties to two pharmaceutical companies, namely GW Pharmaceuticals and Insys. Feel free to read up about both companies and what they're doing. The title of this Washington Post report should give you a taste: A Pharma Company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana.

In the video, Dr. Hussain makes some startling and very disingenuous remarks about cannabis medicine, including the horrendous last case history. It is literally rife with inaccuracies and bombast -- stuff that I won't deign to go over.  I participated in a panel "discussion" (quotes are because there was no discussion as the Powers That Be literally shut down we uppity folks with the tiny little mother minds™) with Dr. Hussain several years ago at a Brain Summit put on by the Epilepsy Foundation of Greater Los Angeles. The panel "discussion" was about cannabis medicine, and I spoke from a parent perspective. I wrote about it here as it was the proverbial straw that broke this camel's back as far as my trust and respect for the neurology world in general and the party line about cannabis in particular. It was insulting, demeaning and patronizing, and it continued even afterward in a series of emails with Dr. Hussain. 

 Toward the end of his presentation on the video, he advises the doctors in the audience that it would behoove them to report those parents who are using cannabis medicine with their children to Children's Protective Services. 

That might be the second straw that drives the broken-backed camel into the sand.

Here's my comment to the post and video on Facebook:

This video will probably be taken down, but before it is, take a look and a listen. These are the people -- DOCTORS -- with whom we must work as we navigate the medical cannabis world. Here's my comment, in case, it's taken down as well:

After parenting a daughter with a severe and uncontrolled seizure disorder for over two decades, I can't say I'm surprised, but I am appalled at the outright disingenuousness of Dr. Hussain's presentation here. The pretension, the condescension and outright ignorance don't enrage me as much as they confirm what I've learned as well about the neurology profession in general but specifically this subject. The laughter in the audience confirms, to me, that those in attendance, including the presenter, are nothing more than shills for the pharmaceutical industry. To speak of and warn doctors of their duties as "mandated reporters" is unethical and profoundly disturbing. I know for a fact that these same doctors are actively nodding their heads as parents navigate the cannabis world. You HAVE violated your Hippocratic Oath, quite effectively and systematically, over and over. I imagine this video wasn't intended for public viewing and that it will be removed, but there are many of us out here who will have seen it, transcribed it or will have heard of it. It doesn't surprise us, but it will further disintegrate the relationship between doctor and patient and foster increased mistrust toward those who are supposed to be serving us. Yours is a profession that will prescribe a powerful benzodiazepine to an infant, or any number of powerful drugs not studied in children yet remain obdurate about a treatment and a medicine for which there is reams of data and information. Shame on you.




*Realm of Caring is a non-profit foundation. The Stanley Brothers make Charlotte's Web. There are several other manufacturers of cannabis oil  using different strains of marijuana. Dr. Hussain, while joking about the good-looking brothers, neglects to differentiate between the two.

Denial and the College Road Trip

I took that picture on a road trip last weekend in Washington and Colorado where I was visiting colleges with Henry.

Did ya'll know that my boy is graduating from high school next month?

I'm blocking it out and will say no more.

Here we are in Spokane, Washington, on the campus of Gonzaga University.

We might have a basketball rivalry thing going on next year.


Hmmmmm. Just saying.

Identity is Fluid

So, this is a picture of me and newborn Sophie in March of 1995. I found it this morning when I was rummaging around in a drawer on my desk. It was precisely twenty-two years ago and less than three months from the day that life as I knew it would begin to unravel. As a friend put it: BTSHTF.*

When I see these old photos of The Time Before, I can't help but peer at them in a sort of writerly self-absorbed searching for the meaning of the whole clusterfu**k that we call life kind of way. I'm constantly wrestling with identity --what it is, exactly, that makes us who we were, who we are, what makes us human. I can remember who that young woman in the picture was if I think hard enough, and lately my life's strange and beautiful circumstances have reminded me of her, too --  but I believe we hold some kind of essence that is constant even in inconstancy, if that makes sense. I will go out on the proverbial limb here to include Sophie as well. That baby I'm holding was very different from the baby that was diagnosed with infantile spasms a couple of months later. I remember thinking in the months that followed that I'd been given a new baby, so violent were the expectations up-ended. Bless my sweet heart. I don't remember when I realized that Sophie's essence was intact, but today, twenty-two years later, I'm thinking about how identity is fluid, and it leaks out of the eyes and down the face from some kind of deep dark well.

 I toured a facility for developmentally disabled adults this afternoon. The place was a sort of Bleak House and fulfilled my expectations for such a place, even if I entered it with the usual dumb hope whose source shares room with fathomless sorrow. I was going to write a quasi-bitter post about the sheer physical ugliness of the facility, how many adults were crammed into tiny rooms with no windows or decoration or flooring or soft surfaces, how we determined that Sophie's toileting needs could not be accommodated as there was no changing table in the restroom, and how when I voiced my objections to that, I was reminded that perhaps the Senior Care facility down the road was a better fit for my daughter. How old are the people in that facility? I asked. Around 45-80 years, but we have some younger ones, the director told me with a straight face, even as she took the machete hanging on the stucco wall and slashed my chest. Reader, these people were kind and industrious, I swear.

Identity, you remember, can be fluid.

At worst, the seventeen minutes I spent at the facility was a kind of Monty Python scene of absurdity with tinges of Ingmar Bergman and the careening humanity of Fellini. Know that places like this are where WE AS A CULTURE HAVE CONSIGNED OUR FELLOW HUMANS WITH DEVELOPMENTAL DISABILITIES, at least those who aren't from wealthy families (and I mean wealthy, as in rich as shit). These are the places that WE AS A CULTURE LEAVE TO POLITICIANS TO FUND, TO HACK AWAY AND MARGINALIZE. At best, visiting Bleak House was the sort of experience that has helped to define me as a person and a writer, however self-absorbed.

I lifted my head from the steering wheel after crying there for a moment or two and realized that it'd be interesting to take a photo twenty-two years ATSHTF.** If identity is fluid, it is here, leaking out of the eyes and down the face from some kind of deep dark well.

Identity is fluid. Essence is intact.
























  *Before The Shit Hit The Fan
**After The Shit Hit The Fan

What I did past midnight tonight

I certainly didn't sleep. I was just closing my eyes, though, lying on my side, like I do, when I heard her beginning to seize in her room down the hall. I say down the hall, but it's only a few feet. I can hear her, even when she takes that first breath or perhaps it's an exhale because it becomes a groan, but first it's just a breath and I hear it, even when I am just there, falling to sleep. Falling. We fall into sleep and we fall over. Onto the ground. We fall under a spell and out of a trap, away from harm and backward in shock. We fall in love and also out of. I have fallen in and never out -- of love. I am in love right now. Can't you see it? Sophie has fallen, over and over, fallen under a spell while falling into sleep. Seizures often happen at the threshold of sleep, the place where eyes are closed and the thoughts are threads, a fish tail flicks. The liminal. The measure of my hatred for them is their resistance to falling victim to -- what? Anything. They've fallen victim to nothing so my hatred is everything. I know, even so, that I've fallen for it, delusion, illusion, maya. Things have long since fallen out of place. I have no control. I sat on her bed and wiped her hair away where it had fallen into her face. I wiped her palms, the drops of sweat, the drool, fallen away from her mouth. I told her it was okay. I wanted her to fall back to sleep. I wanted it to all fall away.


Things fall apart.



Nonetheless, there were no more diapers in Sophie's closet, and after a seizure, she needs a change. The case is outside at the back of the yard in the shed.



That's what I did past midnight tonight. I wore my long black nightgown and swung my phone's beam of light, let it fall right then left. Please, no creatures, I whispered. I walked down the steps from my bedroom and fell into night. Feet on gravel, a distant siren. I reached for the box, let it fall off the shelf, paid no mind to the corners there in the dark where the light fell away and I walked back to the house with the box up on my bare shoulder, the lace of a spider-web fell and caught on the lace of my gown.

We are brave people. We are strong.