Monday, April 16, 2018

She In There



This is what Sophie looks like when I take away even the tiniest bit of Onfi, the benzo that we've been trying to wean her from for four years. I'm still weaning the damn drug, a tiny, tiny bit at a time. I tinker each time, as well, with the various cannabis medicine products, and good things happen. Every day is different, though, and we continue to live this life as an experiment in progress.

Like my dear Dr. Jin said, so many years ago, She in there, she know.

I am sorry that I've left you readers high and dry, an occasional post once or twice a week. I haven't visited blogs or left comments, have been deleting newspapers and articles from my Inbox and have just generally avoided -- well -- everything. I've been down and blue and struggling a bit with I don't know what, but I feel it lifting a bit and hope that I will soon be back in writing daily order. I'm engaged in the world as I've always been, but man oh man every single day we wake up to that vile emperor with no clothes and his persistent presidency. It's a freak show and a clusterfuck, and like we say in the writing biz, you just can't make that shit up. I'm not underestimating its effect on my psyche -- nor should you if you're of the same persuasion. If it doesn't bother you or you're one of his supporters, well, I'd bless your heart if I felt any respect for you at all. May it all be over soon and not because some bomb is dropped on us for being such idiots. The thing is, though, that what's rent is rent, right? The veil has been pulled back. The core is rotten, isn't it? So much work to do and most of it is about coming to terms with our privilege and our whiteness.

I've been reading a lot lately -- have been able to dig in deep and get through to the end of novels and bask there glad and filled up. I recommend Lisa Halliday's Asymmetry, Jesmyn Ward's Sing, Unburied, Sing, Terese Mailhot's Heartberries: A Memoir, Claire Dederer's Love and Trouble and An American Marriage by Tayari Jones. I had ordered a book from the library that finally came in, so many months after the request that I forgot where I'd read about it, but I really liked it -- a novel called Elbowing the Seducer by T. Gertler.

Oh, and then there's Fire Sermon by Jaime Quattro. I'm obsessed with her and her writing, her brain and mine.

What else?

I've tried to wander into museums, too --saw a beautiful David Hockney show at LACMA over the weekend and an amazing exhibit that included a multi-media show by Kara Walker at the Hammer last week. I'm so grateful for the sustenance of art -- of words and painting wrought, especially, from great struggle and suffering. Our lives are enriched even as our own troubles recede and perspectives enlarge.





Thursday, April 12, 2018

Dear John Boehner,

My daughter, Sophie, one of the many people who has suffered because of your influence


Dear Mr. Boehner,

My first response to your recent "evolution" toward supporting the legalization of marijuana was two words strung together. The first sounds like truck and the second like foo. I'm aspiring to the elevation of language, though, so I will refrain from using epithets, however justified. When I recovered from seeing your picture (dated from 2015, and I frankly would have preferred never seeing your face again) above an article titled John Boehner's Marijuana Reversal, I learned that you had used Twitter to announce your startling "change of heart" regarding the legalization of marijuana. Here's your Tweet:

I’m joining the board of because my thinking on cannabis has evolved. I’m convinced de-scheduling the drug is needed so we can do research, help our veterans, and reverse the opioid epidemic ravaging our communities.

My second response was a physical one, a stomach-clenching, heart-pounding, limb quivering somatic blow-out that had everything to do with rage. My rage. I could have been the Bodhissatva of rage. A Bodhissatva is a being who is capable of reaching nirvana but delays doing so out of compassion for other suffering human beings. As the Bodhissatva of Rage, I am thinking of the grotesque numbers of people arrested for simple marijuana possession, the majority of whom were persons of color. You know the statistics, so I won't include them. I am also thinking of the legion of people, including children like my own, that have suffered and continue to suffer from debilitating diseases that can be treated successfully with cannabis. I'm thinking of the legion of children, in particular, with seizure disorders, who live in states stymied by federal law or who do not have access to the medicine that will alleviate their children's suffering and even save their lives.

I know there are some out there who are encouraged by your "change of heart," but as the Bodhissatva of Rage I am repelled and horrified. You worked incredibly hard during your entire career as an elected official in our government and one of the most powerful senators to block any kind of marijuana drug reform. You knew all the statistics, listened to and read all of the appeals. I appealed to you personally during my days as a cannabis medicine advocate. You rebuffed all those appeals, ignored the statistics, persevered in obstruction and helped to destroy lives and perpetuate some of the most vile racist laws and practices in our country.

One of your buddies had back pain alleviated by marijuana, leading you to see the light. I guess the tens of thousands of appeals from mothers of children with cancer, with autism and with seizures weren't enough. You evidently are also appalled by the numbers of people incarcerated in prisons for simple marijuana possession. You turned a blind eye to literally generations of young men of color for how many years, Mr. Boehner, before Acreage Holdings, an investment company with an enormous footprint in cannabis, brought you on? While you were in Congress, more than 420,000 people were arrested for marijuana possession, the majority of them persons of color. You knew that. How much money do you stand to make now in this new evolved venture?

The wheels of commerce are running beautifully, even as I type. Marijuana stocks are rising rapidly. So much money to be made. Pharmaceutical companies are rushing to seize the whole pie, pushing out those of us who have paved the way. Your evolution is disgusting, Mr. Boehner.

Truck foo.

With no due respect,

Elizabeth Aquino

Monday, April 9, 2018

Seeking Position



Experienced freelance writer looking for work. Experience includes several ghost-written books of non-fiction, medical writing, healthcare writing, personal interest articles for The Los Angeles Times, marijuana.com, Spirituality and Health Magazine and contributions to gratefulness.org and OnBeing. Personal work published in numerous literary anthologies and journals. Micro-memoir published by Shebooks in 2015 and available for purchase online at Amazon for a ridiculously low price. Skills include editing, proof-reading and an uncanny ability to mine story from seemingly ordinary things and lives, and don't we need stories in order to live?

Website with CV and all relevant publications is here.


Salary negotiable.

Saturday, April 7, 2018

Gratitude Schmatitude



I'm not going to lie. I've been feeling about as low in general as I've ever felt, and rather than going through it all here (as I've done ad nauseum for many, many years), I'll just tell you that yesterday was a doozy in nearly all respects, that I spent a good many hours plumbing the dark side and didn't have any expectations that I'd be doing anything other than spelunking for the rest of my life. Have ya'll ever spelunked? I did many moons ago, when I was a painfully awkward preteen. I lived in Georgia, and as I recall it now, the weather was grotesque, hot and humid, but despite this, my mother had signed me up for a number of Red Cross activities which included canoeing, lifesaving and spelunking. As my regular readers know, I was a terrible athlete and preferred reading to just about any other activity, so slithering through a red clay tunnel was not something that I even remotely enjoyed. I do remember, though, that it was surprisingly cool in those tunnels and that I was actually pretty good at spelunking, namely because I was skinny. Yes, I was actually skinny back then and good in the dark, probably confident that light would come.

But I digress.

I know there are plenty of ya'll out there who espouse the whole gratitude thing, and while I've dipped into it now and then as a thing, I'm more prone to feeling gratitude for real, as opposed to a practice, and that's because I actually have so much for which to be grateful. In other words, it's not hard for me to feel grateful, even as I feel like shit or shit's raining down. Also, I was once a Catholic. I imagine only lapsed or former Catholics get the full gist of that statement.

The groove that my forehead has worn in the tile of my shower got a little action yesterday, as did the plumbing. Lots of tears. I am certain, during these times, that bitterness, resentment and overwhelming sorrow will take me over. You figure out which of those sentences are hyperbolic.

Then I opened my mail. I ordered the above pictured book a few weeks ago. It was published by the folks at gratefulness.org, or A Network for Grateful Living, an online site that I've had the pleasure of reading and then being a contributor off and on for many years. I always felt like a bit of an imposter when my writing appeared on their site, mainly because of the above -- the bitterness and resentment, the gratitude schmatitude thing and my own skill at spelunking. I ordered the book because what they do at gratefulness.org is a beautiful thing, and I want to support them. So, I'm flipping through the book, reading beautifully illustrated quotes by the Buddha and Barack Obama, by Brene Brown and Maya Angelou, Desmond Tutu and Mother Theresa, when I come upon -- well -- me.



I swear I'm not telling you this as an act of self-promotion or even as a humble brag. I'm telling you this because I was feeling as low as I've ever felt as I flipped through this small book, and I had no idea that my words would be excerpted in it. My initial response was to burst out laughing at all the world's absurdity, particularly my own.*

There are no accidents, my friend Carrie Link has said.

Yes, I felt buoyed by the support and restored by the acknowledgement. I felt released by laughter. Mostly, though, it occurred to me that even the great sages with whom I was absurdly placed must have periods where they, too, are stuck in dark tunnels, crushed by the earth, that all of us share this humanity and that we are humbled by one another and, of course, completely grateful for one another. For real, not as a thing.


You can order Everyday Gratitude here. Please support them because they're doing beautiful work in this world.













* The index of contributors places me after Maya Angelou and before Joan Baez. I know it's alphabetical, but ya'll!

Thursday, April 5, 2018

Cambria



Oliver and I, along with my dear friend Cara and her two daughters, drove up to Cambria yesterday. We''re spending two nights here, just hanging out and doing -- basically -- nothing.



It occurred to me the other morning when I was talking on the phone to my friend Christy Shake that the only way to survive the life we live as caregivers to children with seizure disorders is to replenish ourselves in any way we can and to do so regularly.



I know this is a privileged thought -- I know that there are many people who are out there doing the work we're doing who don't have an opportunity to get away, who dig down continually to find strength to keep going. I know, too, that some people just won't get away or refuse to get away or believe that they can't get away because there's no one who takes better care of their child than they do.



I don't know what to say to that other than it's become about as necessary to me to get away as it is to keep doing what I'm doing. As necessary and in order to live, even. Cognizant of my privilege, I can tell you that it's only been very recently that I've "gotten away" and not felt guilty about it or worried that something very bad is going to happen to Sophie. I'm going to say those things without judgement or explanation and will ask you not to as well. Tell me anything, that is.

Caregivers of severely disabled children, especially those who've been doing it for decades, know some things and we know them deep. Things haven't gotten easier even as I've learned how to dissociate and then come back. I don't know the word acceptance even as I surrender. The word toll. Taken.

There's everyone and then there's us.

Three things:

The cumulative years
The present
The projection into the future



I feel joy in my core even as that deepest part is dark. Memory.


I had a long conversation with an Italian artist in his studio amongst sculpture and paintings. Angels and toreadors, winged things, dancers and an architect, the suggestion of things broken and things free. Sophie in all of it, as was Carl and his birds. The words wing and soar. I'm most myself, both consumed and generative, in art.

Nature, too. Respite. Respire.






Everyone forgets that Icarus also flew, the poet Jack Gilbert wrote.




Wednesday, March 28, 2018

Shedding Tears



I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe



Monday, March 26, 2018

Archival Footage on Epilepsy Day



I found this in a shoebox of old letters at the back of my closet. I've always carried around a tiny notebook in which to jot observations, things seen that I might later write around. This one only had a few pages of scratchings -- the first dated March 25th, ironically, one day before Epilepsy Day (which I imagine wasn't a thing back then) and a few weeks after Sophie was born. It had that sort of innocence to it.



(branches).

The next page had this scrap:



I think I've told you before that I didn't write much of anything for many years after Sophie's diagnosis in June of 1995. An old writer friend of mine who developed Hodgkins disease in his early twenties once told me that he found it impossible to write anything during his treatment, yet I know countless people who've written quite brilliantly through whatever tribulations they've undergone. Write through it some people say, but I couldn't do that back then. I think it's because I'm good at punishing myself.

I can hardly remember what it felt like to be the me of those early pages of the little notebook. By the time the summer rolled in, we were in the thick of it.




There's no date on that list of questions I posed to Dr. Solomon, but she was Sophie's first neurologist, and prednisone was what we used when They (it's always They) ran out -- yes -- ran out of ACTH, the steroid gel we were injecting into Sophie. It must have been the middle of the summer of 1995, about two months after her diagnosis. As I remember it, ACTH was only used for six or so weeks because the side effects are brutal. Sophie's face blew up, and her eyes were slits, her mouth covered in thrush. It wasn't helping the seizures, either. The latter part of the treatment was a weaning period. That's when there was no ACTH to be had (what the hell, right?), so They (it's always They) put Sophie on prednisone. The weaning process gave Sophie pseudo tumor cerebrii, a rare side effect.  I noticed Sophie's fontanel bulging one day, not just when she screamed, which she did most of the day while on ACTH and prednisone, but even when she passed out. They (it's always they) relieved the fluid pressure by giving her a series of spinal taps. Sophie was barely five months old. I turned 32 a month later.



I'm not sure how I got through those days, but I did, because here we are, right? Back then, I took notes in the little notebook and took it to her pediatrician.



Guess what? I haven't looked at this little notebook in more than twenty years, but I remember every single thing in my tiny little mother mind.™ It's as if my writer mind was compiling detail even as my writing was reduced to lists and questions.



Busy. Busy. Busy.


It's March 26th, 2018. It's officially Epilepsy Day or Purple Day.

I'm obligated to educate you about epilepsy. I got a message from a good friend whose young adult son has severe epilepsy. She is helping someone in the Epilepsy Community find a good neurologist for her child who, they believe, has infantile spasms, the same syndrome that Sophie was diagnosed with back in 1995. If I told you that the treatment for infantile spasms is much the same twenty-three years later with the exception of a couple of new drugs and the "advancement" of brain surgical technqiues, what would you think?

  • Epilepsy affects more than 1% of the population. 
  • 1 in 26 persons will develop epilepsy at some point in their lifetime. 
  • More than 30% of persons diagnosed with epilepsy will struggle with seizure control. 
  • 1 in 1000 adults and 1 in 4500 children will die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) a year. This is the leading cause of death in patients with uncontrolled epilepsy.


Sunday, March 18, 2018

Parables of Neurology, The Cosmos



Star Trails
Photographer: Carl Jackson



At some point in the waning years of the last century, Sophie was on her eighth or ninth drug, a drug that wasn't yet FDA-approved but that The Neurologist At The Time thought worth trying. I received the drug from a pharmacy in London, a tiny little shop on a cobblestoned street with a 17th century sign hanging outside that swung in the English rain. You figure out which part of that sentence is fiction. I've told this story before. The drug was a white powder and came in a foil packet called a sachet, and after I carefully poured the contents out, I cut them with a razor blade to get just the right amount for the baby, about enough to fit into a 1/4 teaspoon. I dipped my finger into the powder and put it on my tongue. Powerful enough to stop seizures but bitter enough to spit out. I gave it to the baby.

Know that the word irritable is frequently used in neurology literature as a possible side effect. An Earlier Neurologist listened to my complaints about the Baby's constant fretting and said, You have to figure out what your tolerance is as far as irritability, after which I lit the fuse that connected the telephones of the last century that we were using and blew him up. That should be parenthetical.

On the third day and then night of the drug in the sachet, Sophie began screaming all night long, flailing her arms and arching her back. She screamed until she became hoarse. You can't imagine what a hoarse infant sounds like -- just air but more -- air that you can hear, and I spoke into the air as I walked with her, up and down, up and down. Enough. This is enough. No more. We will not do this. The next morning I called The Neurologist At The Time. The Neurologist At The Time was what they called cutting edge, no pun intended, knives and docs, docs and knives, and I liked him. I was going to say love but that would be fiction. I called him up and said, The Baby is beyond irritable. She is psychotic, if babies can be psychotic. She is still seizing. She is now on two non-FDA-approved drugs and is being weaned from Phenobarbital. How many babies do you know on this combination? Could the three drugs be interacting? 












(silence)













The Neurologist At The Time said, That's a very interesting idea, and the words travelled as sound through a wire connecting us, across the country (I was visiting my parents in Atlanta and The Neurologist At The Time lived in New York City) and assembled themselves into block letters that floated out of the can I held up to my ear and spun round my head.


T h a t ' s    a   v e r y   i n t e r e s t i n g   i d e a.












(silence)









I have a Bachelor's degree in English and French literature. I've also read an indeterminate number of novels, including all the classics in French. I've studied Mandarin Chinese, excelled in modernist poetry and wrote an honors thesis on Pascal's Pensees. The only science class I took in college was Zoology, and during my senior year I thought I might round out the piles of novels and poetry that lay everywhere in my room by taking Waste Management. I got a D in Calculus.  Yet, evidently, as per The Neurologist At The Time, The Cutting-Edge Neurologist, I was having interesting ideas about my nine-month old daughter's brain and its response to seizure drugs from other continents.

I never got over this, by the way.

The landscape changed in a moment, over the telephone. The tiny little mother mind™was born in that moment, and I'd describe the birth as a kind of star trail like the photo the Bird Photographer took in the middle of the California desert, a time-lapse of stars burning or dying or traveling as the world spins on its axis, but that might be a mixed metaphor, and I  don't know physics either or even photography. Black holes. No man's land.




This is not fiction.


Stephen Hawking said, The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.


Tuesday, March 13, 2018

Whacking Moles



I don't know if that's a Buddha in my coffee cup or Edvard Munch's dude, screaming.

And that's all I've got to say today.

Reader, what are you up to these days?

Wednesday, March 7, 2018

Sophie's Birthday Eve Reflections



Sophie will be 23 years old tomorrow, March 8th. Everyone says, I can't believe it! or they say, My God, how time flies! It's hard to believe that she's 23 years old! Sophie would if she could and I will tell you that it's not hard for us to believe that she's 23 years old, that we feel every second of those 23 years, that they have not flown by even for one moment, that she was a tiny baby and I her 31-year old mother in another lifetime, eons and eons ago.

We are filled up with 23 years, exhausted and exhilarated and indomitable.

Richard Engel, the chief foreign correspondent of NBC News has a very young son with Rett Syndrome. Rett is one of the many disorders that we ruled out as a diagnosis for Sophie, back in the early days when the powers that be had discovered a gene marker for it. Sophie tested negative for that particular mutation even as she had many of the clinical characteristics of Rett Syndrome. Since those days, they have found other mutations related to Rett Syndrome, but I admit to being lazy about testing Sophie for them. It has something to do with my ambivalence about the medical community, about what it means to fix and to cure. That's a post for another day.

Mr. Engel has written a beautiful piece about his experience fathering this special child and persuasively argues that his experience as a war correspondent and knowledge of PTSD parallels that of this new parenting journey. You can read it here.

On the eve of Sophie's 23rd birthday, I confess to reading the article with a bit of an eye roll -- well, not exactly an eye roll but more a sigh. I imagine that fellow veterans (war imagery always irritates me, but it's appropriate here) will understand. What struck me, on the eve of Sophie's 23rd birthday, is how innocent and heart-ripping Mr. Engel's yearnings and aspirations are and how dim his understanding of the journey ahead. That is as it should be. I don't mean just the trials and struggles, the cycles of grief and loss and anger and acceptance but rather the knowledge that comes from those cycles, and that contrary to what the psychologists tell you, they repeat themselves over and over and over. Despite the beauty of his prose and the exquisite sensitivity and vulnerability he reveals, he has no idea that he might one day, like we veterans, realize that his love for his son has absolutely nothing to do with curing him.

Monday, March 5, 2018

Gig Economy Update

Everyone Needs Cake™ for March Selections
photo by Carl Jackson


The gig economy is going ok. I'm making cakes every month -- this month's selection is a Funfetti Vanilla Cake with Vanilla Buttercream and White Chocolate Ganache Glaze and a Pistachio Rosewater Cake from Ottolenghi's new pastry/sweets book. I have orders for both of them throughout the month but can always take more! Everyone Needs Cake.™ I'm also working on a very cool project with a very cool tech entrepreneur that you will hear about soon, so stay tuned. I have some nice writing assignments via The Los Angeles Times but am looking for anything I can get to supplement them. Do you need a ghost writer? Do you need a writer for anything? Check out my website and pass it along to pertinent people.

As you know, Sophie is an Uber driver and working toward getting off the backs of our hard-working Republican lawmakers who are working on balancing this great Disunited States of Amerikkka's budget on her back. Between the Uber driving and her part time job as a sex worker,* she'll be in the black soon, I'm certain, and recognized for her contributions to the great Capitalist Economy.

Today, I paid my health insurance bill before my mortgage because -- you know -- I'd sooner be homeless than without health insurance.  That's not a complaint.

In other news, I thought I'd misplaced the four worn sheets of passwords that I keep, so I spent about two hours on the computer changing the passwords to all the important accounts, and then I found the password sheet in the dash of my car where I'd stashed it on my way to Palm Springs this weekend. Does anyone out there in the interwebs know of a better way to organize, store and keep safe from Russian bots the bazillions of passwords to one's accounts?

I hope ya'll are having a nice day. I miss all of you.











*See my post a few days back for an explanation to this, admittedly, inappropriate and very dark-humored comment.

Thursday, March 1, 2018

The Sheering Sun




There are those with whom I have nothing in common but the blood that runs in the veins. Cliche. The word blind doesn't mean what you think, if you're able and are you? Seeing nothing but light. Our shadow selves. Reading poetry this morning.


In the Beginning God
Said Light

Mary Szybist

and there was light.
Now God says, Give them a little theatrical lighting

and they're happy,
and we are. So many of us

dressing each morning, testing
endless combinations, becoming in our mirrors

more ourselves, imagining,
in an entrance, the ecstatic

weight of human eyes.
Now that the sun is sheering

toward us, what is left
but to let it close in

for our close-up? Let us really feel
how good it feels

to be still in it, making
every kind of self that can be

looked at. God, did you make us
to be your bright accomplices?

God, here are our shining spines.
Let there be no more dreams of being

more than a beginning.
Let it be

that to be is to be
backlit, and then to be only that light.

via poem-a-day

Tuesday, February 27, 2018

Doctor Visit, Year Twenty-three



Last Month

The new doc was a nice guy, even though he was about twelve years old. I appreciate that his practice, at a major medical center here in the City of Angels, has a significant number of young adults with developmental disabilities. I'm older than I look, he assured me at some point during the initial visit. I have three children. Generally, these visits consist of The Doctor asking me a whole lot of questions whose answers are duly noted in chicken scratch on the clipboard he or she sports. Nowadays, there's a keyboard and a computer screen that's always facing away from The Mother and The Patient. I'm not sure why this is so, but given the mundanity of the questions and the number of times in The History of Sophie, Inc. that I've answered them, I like to imagine that Sophie's file is flagged with some kind of red banner or star that stands for Noncompliant Mother. I like to imagine that it says somewhere in the reams of "information" it purports to have regarding my darling daughter that there's anecdotal evidence of seizure control success with cannabis medicine, but mother is a bit on the aggressive side so shouldn't be supported because it'll go to her tiny little mother mind™ and blow it up. I like to imagine a banner running across the screen that says, We have not helped this person in the 23 years that we've been treating her, but pretend like you know what you're doing.  Mother historically has been correct about her daughter and mainly appreciates kindness and honesty. To be fair, this was a Doctor and not a Neurologist, and like I said he was kind and direct and spoke to Sophie like she existed and I feel a bit of relief that we perhaps have finally found a physician that will coordinate her care, when it's needed. When it's needed is the operative phrase here, and it's been my experience that we're sort of held in thrall to the medical system, that we're a bit enslaved to its protocols and rules and regulations. But, I digress. The Doctor asked all the right questions for a bit and was respectful of my wish to not vaccinate Sophie. When he suggested that she should be tested for immunity to hepatitis, I reminded him that she would have no immunity, since she is no longer vaccinated, and then he suggested that she should be vaccinated with that and with the flu vaccine as well since the risk of complications and death from those diseases is so great, and I wanted to tell The Doctor that I feared Sophie's death every single goddamn day, and it wasn't from the flu or hepatitis, but that I'd also reached a sort of equanimity about it all, at least the death and absurdity part, but instead I demurred and gave a 16th century smile. When he asked whether Sophie was sexually active, I pulled the sword out of the scabbard at my waist and cleaved the keyboard in two, right between his legs, missing the member that had given him the three children, of course, because my aim is always true. Then I took a hold of Sophie's wheelchair and rolled out of the examining room.

Wednesday, February 21, 2018

The Alchemy of Sophie and Me (with an update)

Lunch in the neighborhood with my girl today


Sophie's doing pretty well.

I've been tinkering with her cannabis medicine under the guidance of Dr. Bonni Goldstein. I've also been reducing the Onfi.  She had a bad month, beginning with that red full moon thing and stretching on for weeks. A bad month means a bunch of tonic clonic seizures, lots of clamminess and drooling and difficulty walking and swallowing. It's hideous, really, and each time it happens, I have to go through this sort of willed calm and resignation. I fear her death. I'm nothing but brutal and honest, you know.  At some point during the third week of this, Sophie had a flurry of seizures, and Dr. Bonni suggested that I double up her dose of CBD. Really? I asked. I trust this woman for a myriad of reasons, but mostly because she's been absolutely spot on when it comes to dosing Sophie.

I doubled the dose of CBD  and kept the CBDa the same. The combination stopped the seizures cold. She hasn't had a seizure since. The side effect of the double dose is fatigue and weakness. I wondered, too, if Sophie wasn't even a tiny bit stoned. I don't like the weakness and fatigue, but I don't care about the high.  I asked Dr. Bonni whether I should reduce the dose, but she felt that I should keep her on it for another few days, so I did. I also reduced the Onfi again by another .5 ml. Here's the thing. The cannabis medicine interacts with Onfi and perhaps jacks up the level of Onfi, making her very tired and weak. We need to get her off the Onfi, though, and let the cannabis do the work. She was so tired over the weekend, that I decided to hold off on the cannabis medicine on Sunday night and all day Monday, even as I reduced the Onfi.

I did this with my guts and experience. I'm not sure how to tell you to do what I do other than to emphasize how powerful one's instincts are when you've been doing what I do for so many years. Trusting your instincts is always a good idea, and it's an especially good idea when you combine it with experience. Emotion doesn't play a very big part in any of this, to tell you the truth. It's working on the edges of nerves, if that makes sense, and I've gotten pretty good at it.

Sophie's now on a much bigger dose of cannabis and a much lower dose of Onfi. She's had nearly two weeks of being seizure free. I gave her a couple of days without cannabis to see if she might revive from the fatigue (she did) and added it back in today because it felt like the right thing to do. That's the intuition part, a very powerful nearly Shamanic feeling that I occasionally have and that I have learned to trust. It doesn't take a scientist to carefully figure out that since she's never seizure free on Onfi, especially at high doses, but seizure free on lower Onfi and higher cannabis, it's very likely that it's the cannabis doing the anti-epileptic work.

I'm going to continue weaning her from the Onfi and tinkering with the cannabis. Sophie's keeping me on my toes quite literally --



UPDATE: I edited a bit here because of some folks' questions about the products that Sophie is using. She has used a combination of Myriam's Hope or Canna-Kids, CW Everyday and THCa in various dosages for years. We have found that Sophie needs a bit of THC for better seizure control. Charlotte's Web has worked beautifully for Sophie, but it has a much higher CBD/THC ratio, so we supplement with products that have more THC. Right now, we're leaving it out of her daily regime, but that's probably only for a short time. It's important for readers to know that cannabis medicine is highly individualized and that what works for Sophie might not work for everyone. In addition to trusting my instincts, I trust consultation with my cannabis medicine doctor and the folks at Realm of Caring (who've guided many of us for many years). 

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