Tuesday, March 13, 2018
Wednesday, March 7, 2018
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
|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
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
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.
Tuesday, February 27, 2018
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
|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).
Monday, February 19, 2018
|Random photo of Sophie that my friend Jody sent me over the internets this weekend|
Precious child, Jody wrote when she sent me the photo above.
Isn't everything entirely wacky? Do any of ya'll listen to the podcast "The Daily?" Today's segment was like listening to a thriller. It's all about the Russians and their attempts to mess with the "democracy" that is, arguably, the United States of America. We've all been played like idiots, apparently. I shouldn't be flippant as it's actually pretty chilling. Here's the link.
My friend Moye texted me the other day. What is going to happen to us?
What else? I've been on a novel reading binge of late which cheers me. While I like to say that reading is my only constant, it's much more difficult these days to fully immerse myself in fiction. I've finished Jesmyn Ward's Sing, Unburied, Sing: A Novel, Jaime Quattro's Fire Sermon and T. Gertler's Elbowing the Seducer. I absolutely devoured each one. I think I'd consider marriage for the third time with Jaime Quattro or at least some kind of long-distance mind meld.
What else? I saw Black Panther on Friday night with The Bird Photographer. It was an exhilarating movie, even if you don't care for action hero sort of movies. It will deeply affect you for days afterward. I figure you've read all about it already, but if you haven't, this New Yorker article by Jelani Cobb is illuminating. I learned something listening to The Bird Photographer's reflections about it. He's an intensely empathic man, a man of few words so carefully chosen and thoughtful, and I'm grateful for his patience. I talk and I talk and I talk and I talk too much. I need to listen and reflect, especially now. We white people have a lot to learn and even more to reflect on. Most of all, we need to listen to people of color, to their words. We need to soak in their art, open our eyes and our hearts, let our minds blow open.
Wise counsel told me to continue to speak clearly. Speak clearly, she said.
Keep resisting, I think. Don't normalize or conform. Be brave.
What else? This post is phenomenal. I have been reading Gabrielle of Design Mom for nearly a decade, and I admire her so much.
Here's a repost of one of my favorite Jack Gilbert poems.
A Brief for the Defense
Sorrow everywhere. Slaughter everywhere. If babies
are not starving someplace, they are starving
somewhere else. With flies in their nostrils.
But we enjoy our lives because that's what God wants.
Otherwise the mornings before summer dawn would not
be made so fine. The Bengal tiger would not
be fashioned so miraculously well. The poor women
at the fountain are laughing together between
the suffering they have known and the awfulness
in their future, smiling and laughing while somebody
in the village is very sick. There is laughter
every day in the terrible streets of Calcutta,
and the women laugh in the cages of Bombay.
If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world. To make injustice the only
measure of our attention is to praise the Devil.
If the locomotive of the Lord runs us down,
we should give thanks that the end had magnitude.
We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafes and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.
Saturday, February 17, 2018
I have a feeling that things are going to change. Between the kids themselves stepping up and speaking clearly and demanding accountability, and the growing power of resistance groups organizing with renewed energy, we’re going to change things. Women’s voices, raised in anger and in force (not violence) will propel this change. We will make the opposition irrelevant. I have a feeling. So don’t give up.
Thursday, February 15, 2018
So, I’ve got an interesting twist on yesterday’s post. This morning I learned that the man who had wished for me to be “sterilized” when I stated my antipathy to guns (I actually called for them to be melted. I was emotional) on a friend’s thread on Facebook, was actually not a man at all. I had joked to another commenter also insulted that he might not even be a person, but, rather, a Russian bot. Reader, I don’t know what the hell a Russian bot is, but we use language like this now. Willy nilly. Apparently, someone was impersonating my friend’s friend — was it a hack job or a Russian bot?
What is going on?
The world is ugly and the people are sad. Piles of dead children are growing.
Someone from Russia tried to reach me yesterday. There’s a screenshot of the number.
What is going on?
Wednesday, February 14, 2018
|Guadalupe Valley, Mexico|
But let’s keep our sympathies where they belong — with the powerful and the armed. With those who feel threatened in the face of the most toothless efforts to hold back the bloodshed and those who believe scary monster stories about their guns being taken away. Let’s face it, it would be easier to take away the ocean or the stars.
from Please Don't Get Murdered at School Today, by Kimberly Harrington
Yesterday, I engaged in a long and sometimes over-wrought yet reasonable discussion with a gun enthusiast that went to high school with me in the last century. He gave me the usual arguments -- the Second Amendment, his rights, his love of hunting, his responsible gun use, etc. etc. ad nauseum. Love of nature, the eradication of deer pests. He put words in my mouth (my tiny little mother mind mouth™), insisted that I didn't understand hunting because I was a coastal elite. I thought hmmm in my coastal elite way and stayed polite with an edge of defensiveness. He ranted a bit about sanctuary cities, said he knew a family who had lost a relative to a murderous illegal immigrant. He digressed, as did I. He was sick to death of his rights being threatened. I pointed out that he was "winning," essentially -- that he had the backing of federal law, however loosely interpreted, as well as the efforts of the most powerful lobby the country has ever known. I asked him how many guns he'd need to hunt deer for food, keep deer contained (this being an example of the responsible use of guns) and to protect his family.
He answered, 11, for a family of five. Shotguns were in there, as were rifles, I think, and a couple of pistols. I questioned his fear. He said he feared very little and neither should you.
I felt sick to death the rest of the evening and deleted the conversation.
Today, when I expressed my horror at what happened in Florida, when I gave in and said, Fuck guns, melt them all down, get rid of them, I was told to go get sterilized by another person, someone whom I don't know. I clicked on his Facebook page and saw that he was an older white man, somewhat puffy, surrounded by children. God was mentioned several times on his public page, as were fostering children, and sobriety was a common theme. He frequently used the word pussy in a derogatory way.
Aside from the growing piles of dead children, what breaks my heart is my own children's cynicism regarding these school shootings. Perhaps it's a way to defuse their own emotions, to dissociate from their own terror and confusion that this is where we are as a country. Both of my sons state that it'll never change, that there's no point to any of it, that there will always be guns and always be shootings and death and blood and people who justify guns and shootings and death and blood as part of being free.
|Today at a Florida high school|
Tuesday, February 13, 2018
1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?
Why is the process for finding, paying for and getting a wheelchair so labyrinthine?
2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?
Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a dissolving postage-stamp sized film -- make me die a little inside.
|Jimi Hendrix Acid Tabs|
image found on the interwebs
(HINT: It's not because of Jimi Hendrix or LSD)
These are rhetorical questions.
3. Why are we able to launch a rocket into space with a luxury car inside of it?
Why does this make me feel weary?
|Elon Musk's recent venture|
4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?
|Vintage photo of brain imaging equipment|
5. Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?
These are rhetorical questions.
Tiny little mother minds™ ask none but those.
Thursday, February 8, 2018
|Winter in NYC, 1996|
This morning I held Sophie in my arms, her long legs dangling over my lap, her head resting heavily on my shoulder. I had a sort of vision a deep body-felt of her inside me, how I carried her. I closed my eyes and spoke to her in my mind and she spoke back. Language is amorphous even as the body is concrete. I might have never known that if Sophie hadn't embodied it. I can be ugly and persistent in despair. Note the placement of words. Unlike thought, words are specific. Despair is not ugly or persistent, but I am ugly and persistent in despair. There's a tenacity to strength that wears me out. It's impossible to describe. My mind drifted to the winter of 1996, a huge snow storm in NYC, Sophie's pink snowsuit, that damn backpack I needed to climb up eight flights of stairs to our tiny apartment. Sophie not yet a year old and I just 32. There's not only love. Yet, there's love.
Tuesday, February 6, 2018
I think help is on the way.
Pema Chodron this morning after seizures and tears and Mary cards.
In the process of discovering bodhichitta, the journey goes down, not up. It's as if the mountain pointed toward the center of the earth instead of reaching into the sky, instead of transcending the suffering of all creatures, we move toward the turbulence and doubt. We jump into it. We slide into it. We tiptoe into it. We move toward it however we can. We explore the reality and unpredictability of insecurity and pain, and we try not to push it away. If it takes years, if it takes lifetimes, we let it be as it is. At our own pace, without speed or aggression, we move down and down and down. With us move millions of others, our companions in awakening from fear. At the bottom we discover water, the healing water of bodhichitta. Right down there in the thick of things, we discover the love that will not die.
Monday, February 5, 2018
A friend of mine in the epilepsy community contacted me this morning from Canada. She had just learned that the drug Frisium (same drug as Onfi, a benzodiazepine that I've written about millions of times over the years as it's a hideous pharmaceutical with little efficacy for controlling seizures but is intensely difficult, if not impossible, to wean) is being discontinued. She wondered if the same stuff was going down here in the Disunited States.
Here's the announcement that the Epilepsy Toronto organization published:
Medication Alert: Discontinuation of Frisium Tablets in Canada
"Lundbeck has decided to discontinue the manufacturing of Frisium (clobazam) Tablets in Canada. They expect the current inventory to be depleted by the end of 2018.
This decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. The decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. Lundbeck is communicating this change well in advance in order to give healthcare professionals, patients and families as much advance notice as possible so that Frisium patients have ample time to successfully shift to an acceptable alternative."
My friend told me that she tried to get to the bottom of this issue by speaking with the company and then the pharmacist. Lundbeck told her that they "don't normally talk to the general public" and that she should speak to her pharmacist. The pharmacist knew nothing and said, "You should just call your doctor and they will prescribe something else." That evoked a little -- ok, a lot -- of sarcasm, because anyone who knows anything about Onfi/Frisium/clobazam knows that it's nearly impossible to wean it once you've been on it for more than a few weeks, AND there actually are no substitutes except for, maybe, Klonopin, which has its own set of horrors. I felt some small comfort in knowing that even in Canada, big pharmaceutical companies and pharmacies are as obtuse and insensitive as they are here. Canadians just don't have to pay for the bullshit, I guess.
See the ticket price of a 24-day supply of the drug Onfi that I picked up for Sophie just the other day. It's written very, very small up there in the right-hand corner. Sophie's been taking this drug in all of its iterations (Frisium, Onfi, tablet Onfi and liquid Onfi, non-FDA approved and FDA-approved) for nearly ten years. The cost for us has ranged from $550 a month to $70 a month over the course of years, and I've drug-muled it from Canada (you can find those posts if you go to the search bar and put in drug mule), gotten it from pharmacies in Germany and England, been reimbursed by non-profit foundations that are underwritten by Lundbeck (what a racket) and just plain coughed it up (the money, that is). Today, I can only get a 24-day supply because of the tight regulation of opiods and benzos, and since we use the liquid form (more expensive) and the pharmacy can't open a bottle to give a partial amount, we are stuck paying the co-pay every 24 days instead of once a month. Less drug, more money paid by us. Less drug given, more money made by insurance company, pharmacy and pharmaceutical company, I guess.
We have, above all, always been a slave to this drug and the cockamamie system because of its potency and powerful addictive characteristics. The drug has absolutely never really controlled Sophie's seizures. She was given her first benzodiazepine Nitrazepam at THREE MONTHS OF AGE on what was termed compassionate protocol because it was not FDA-approved. She was also given Ativan, Tranxene and Klonopin, none of which helped her and all of which were a bitch to withdraw. My tiny little mother mind™ wants to sit here and dwell on the fact that all of these drugs were and continue to be prescribed and given to little babies without any real knowledge of their long-term effects, but what's the sense of dwelling on The Great Unknown?
It enrages me in the way that those of us who do this thing are enraged. We function quite well at a slow simmer.
After my friend contacted me, I put on my Pharmaceutical Sleuthing Hat (see above).
So it goes, as Vonnegut said so pithily.
I wonder what it would be like if Vonnegut were the Chipper Pharmaceutical Dude. My mind goes hither and thither, thither and hither. That would be Joyce.
* I use this word facetiously as I despise it. If you're a New Reader, know that. It belies the intensity of the situation described.