Going to the Fair with the Fair People I Call Mine

We went to the Orange County Fair last week, ate a lot of fried foods, rode some rides, played some games, won a fish and walked about one hundred thousand steps.

And guess what?

The Bird Photographer took an Honorable Mention in Nature Photography for his exquisite photo of cedar waxwings sharing food. Honestly, it should have taken first place (and there were a lot of astounding and beautiful photos there), and I am -- as you know -- a fierce and discriminating critic. Plus, I'm not biased at all.

You can see more of Carl's photos here:

Website: www.cbjphoto.com
Facebook: carljacksonphotographer
Instagram: @cbjfoto

Tiny Little Mother MInd™ Report, Part 486,783

A lot of you have been asking me about Sophie, how she is, what's going on and whether the cannabis medicine is still helping her. I'm sorry to be so circumspect -- sometimes I feel like an old peasant woman who might jinx things if I dare to utter anything positive. The thing is -- Sophie is doing really great as far as seizures are concerned. I seem to have found a sweet spot with CBD and Onfi, and she's going weeks without any discernible seizures. She's also eating and drinking and sleeping really well. Her mobility is still not as good, though, as it used to be, and it's becoming difficult to take her walking. She's stiff and contracted a lot of the time and resistant to movement. The New Neurologist is working with me to try to figure out what's going on. I asked The New Neurologist whether I should just be satisfied with The Way Things Are. I asked him whether this might be The New Normal. I don't know if it's the years of mindfulness meditation or just what my friend Jody called years ago, creative denial, but I'm pretty good at accepting things eventually, at least with my tiny little mother mind.™ I've figured out most days that the harder I resist whatever is in the present, the darker the day and the quicker the descent into what The Bird Photographer has quite aptly named the dark side. The New Neurologist said quite emphatically, "No. She's only 22, and I don't think we need to accept this incapacity." He's ordered some tests, I continue to give her CBD daily, and I've made the executive decision with my tiny little mother mind™ to do another tiny little wean of the Onfi. The New Neurologist doesn't mind the benzo, so I've decided that I'm on my own, and you know what? I have no more f**ks to give regarding that miserable drug. I'm not sure when, and I'm not jinxing anything at this point.

We shall see.

So that's where we are, and speaking of cannabis:

photographer: Carl Jackson

Do any of you want to know more about cannabis medicine? You've heard me talk about Dr. Bonni Goldstein, right? If you haven't ordered and read her book Cannabis Medicine Revealed,* you should do so now. Dr. Goldstein is a nationally renowned expert on cannabis medicine, and a group of my friends and acquaintances had the great good fortune a couple of weeks ago to attend a presentation that she gave at my house. Dr. Goldstein has a year-long waiting list for patients, but she was not at my house to give personal advice about cannabis. She doesn't sell any cannabis products nor distribute them, but she is a wealth of information and helps thousands of patients with various illnesses to find relief from their symptoms. She spoke of the history and politics of cannabis and answered questions about its efficacy in treating various diseases. Since most of you can't or couldn't come to my house and ask her questions, you can educate yourself and others. I think you'll find the book enormously accessible with well-researched information and compelling stories of some of her patients.

Here's the link to buy the book:

Cannabis Revealed: How the World's Most Misunderstood Plant is Treating Everything from Chronic Pain to Epilepsy

*Disclosure: I helped Dr. Goldstein with the book and am paid a small percentage of books sold.

Weather Empathy

Beverly Blvd, Los Angeles

Around five o'clock this afternoon, it got really quiet and still and I said to Henry that I thought something was going to happen. I texted The Bird Photographer, too. It feels weird. Something is going to happen. We thought earthquake. Everything was quiet. The only thing I heard was the air-conditioner kicking on. No birds, no cars, no horns, no ambulances or helicopters. What would I do if there were an earthquake and I was in the backyard? Henry asked on his way into the house from the backyard where he'd been hitting a lacrosse ball. I was lying on my bed reading. I figured it was a rhetorical question and didn't answer. Henry is feeling anxious about college. My schedule! My future! What will I do? What if I don't do well? I reassured him that no one knows the answers to those questions when they go to college, and if they do, they will probably change their minds once they get there. I told him that it'll all become incredibly clear one day. Ha. I said no such thing. He has no idea that it was only yesterday that I was walking through the Arboretum near midnight with my books on my hip, quickly, back to my dorm where I'd join my Jesus freak room-mate in our Carolina blue room. I'd go down the hallway, take a shower and wrap my hair in a wet towel, go back to the room and sit in front of the window, the fan blowing high, cooling the drops of sweat already beading on my skin.












It rained. Actually, it drizzled. Still! It's August! Well, it was more like a few drops. The sky got dark, there were a few rumbles of thunder and I saw a picture online of a lightning strike in Orange County. So that's what happened. At least for now.

Cannabis and Pediatric Neurology: A Modern Day Fairy Tale with a Villain

Sophie and Me
La Jolla, CA 1999

Sophie was about four years old in that picture. I was 35, and it was the turn of the century and the millennium.

Once upon a time.

I sure wish that I could have had access to CBD oil back then.

I might have avoided nearly twenty years of frustration in controlling Sophie's seizures. She might have never become addicted to the benzo. We might not have had to try fifteen more drugs (she'd already been on eight in this picture). We might have avoided the second trial of the ketogenic diet which reduced Sophie to a pacing tiger in a cage waiting for her slice of strawberry embedded in a stick of butter, her stool impacted and no seizure relief, myself a fucked-up wreck of a woman. We might have avoided a broken leg, a broken nose, a broken hand, a split-open forehead and back of head, more than twenty stitches, permanent teeth knocked out, and a host of side effects: screaming, rigidity, sleeplessness, catatonia, anorexia, stomach pain, headache, fevers, rashes, hives, irritability, ataxia, dizziness, muscle weakness, blurry vision and cognitive decline.

Tonight I learned that another family has been threatened by a pediatric neurologist at UCLA. I'm not going to use his name, but I've written about him on this blog. I've also written quite recently about my own encounter with a bully -- Sophie's adult neurologist and her superiors who refused to discuss medical cannabis with us, even after we had been doing so for nearly five years. The irony of the recent scandal going on in the USC medical school is not lost on me. Look it up if you want to hear some serious shit.

But I digress.

This UCLA pediatric neurologist's  "area of expertise" is infantile spasms, the disorder that Sophie was diagnosed with in 1995. I will remind you that the treatment protocol for infantile spasms is nearly identical to the one we used twenty-two years ago with the exception of a "new" drug that is not new. It was approved by the FDA years after we used it. We tried it back in the last century at the urging of our very cutting edge neurologist because Sophie had already failed eight or so drugs in various combinations. She was nine months old. We got it from England, and we gave it to Sophie along with two other drugs. It didn't work and caused what I thought was psychotic behavior in a baby. Screaming for most of the day and night. It had not been tested, you see, on babies, and who knew whether that particular cocktail of drugs was causing more harm?

This drug Vigabatrin went off the market for a time because it can, in rare instances, cause serious irreversible vision damage. When your doctor prescribes it for your child's infantile spasms or seizures, you have to sign a waiver that you know about this risk. The other standard treatment for infantile spasms is ACTH, a high dosage steroid, administered by intramuscular injection. I believe brain surgery as a treatment has advanced somewhat, but -- it's brain surgery, and you have to be a candidate for it. You have to have a focus area to mess with in the operating room. Sophie did not have a focus.

90% of babies diagnosed with infantile spasms will have moderate to severe cognitive disability and refractory seizures. This number has not improved in decades despite "advancements."

This pediatric neurologist at UCLA is one of the several neurologists in the city, in the country, who are involved in GW Pharmaceuticals' studies of cannabis medicine and their cannabis product Epidiolex.

This pediatric neurologist openly tells his patients about CBD oil and tells those of us in the "veterans" community that he supports its use, but then he threatens families with Child Protective Services.

He is a Janus-like figure, or perhaps that is too kind.

He is two-faced.

We can only surmise that he and others like him want people to stop using what Big Pharma calls "artisanal oils" and start using Epidiolex. We can only surmise that they are  -- let's say -- "on the dole" with GW Pharmaceuticals.

Follow the money, as they say. Except that these are not crumbs laid to remember your way to safety.

I will say that he is a bully. I will say that there a lot of bullies in the neurology world -- both pediatric and adult. I understand that there is a lot of fear. There is liability, lawyers, corporate policy. Medicine As Business.

I will say that we do not trust these neurologists.

I will say that there are pediatric and adult neurologists who are not bullies and who are willing to work with parent experts in a manner that is family-centered. I encourage you to leave your pediatric neurologist or adult neurologist if you are being bullied. I encourage you to advocate for full and open communication with your physicians and demand that they do the same. If they can't work with you, and you are using cannabis medicine, then they should tell you so directly and give you the choice to leave and find another neurologist. I realize that this might be impossible, so do what you need to do. You are in charge.

I don't know if there's a happy ending to this story, or if there's an ending at all. It seems, sometimes, as if we are always beginning.








Feel free to share this post with anyone that might find it helpful. I'm sorry that it pertains primarily to legal states and particularly California, but as long as we have docs averse to communication, we're going to see similar crap going down all over the country as the laws are eased.



Here are your rights and some resources:

Where to Find Pediatric Cannabis Support
Is Medical Marijuana Legal for Children in California
Patients' Guide to Medical Marijuana Law in California

Hilton Head Family Vacation

I don't even know where to start! If what happened last night hadn't happened, I'd probably have titled this post Hilton Hell Family "Vacation" instead of the more prosaic Hilton Head Family Vacation. Because of last night's vote by the Senate to NOT repeal the Affordable Care Act, and because I only found out about it this morning when I woke up in Los Angeles, (much to my shock because when I went to bed it looked like it was going to be the opposite, and I did go to bed filled with anxiety and dread, much like I've gone to bed for the last six months), I would have had a harder time getting on the old blog not sounding bitter and angry. As long-time readers of the old blog know, there is some pretty hard-core partisanship in my immediate family, and things can get very testy. I have a mother who is half Syrian and a father who is full Italian. Let's just say that the three daughters are opinionated, our progeny vocal and we're all -- well -- passionate.

It's a beautiful house, but it's not big and all of us stay there. It's tight and it's raucous.

Long-time readers of the old blog know that every year my extended family meets for a week or so at my parents' home on Hilton Head Island. We've been doing this for over eighteen years, and the kids adore the experience. My experience is, let's say, less joyful, but that's because for the first decade or so I brought Sophie along and have a bit of PTSD, I think (if I were an atheist, I would have become one during "vacation" on Hilton Head Island with Sophie), as well as this aching feeling that she will never truly be a part of these kids' lives or memories. That's a big, complicated feeling that those of you in similar circumstances will probably understand better than those of you who might have the fleeting (and somewhat accurate) thought that I need some gratitude or awareness of my privilege or -- well -- whatever.

The Progeny

The kids are all getting so big, and despite the geographical distances between us (Los Angeles, New York, St. Louis and Washington, D.C.), with social media and this annual get-together, the cousins remain remarkably close and are a joy to watch. Not only are they all, literally, beautiful, but they're also a kind and very funny bunch. We had many a laugh, particularly one night when we each used our Bitmoji characters and texted one another from the same room, with one text more clever than the next, all of us laughing so hard that we cried. 

O.K., I cried. 

I'm really proud to say that most believe my Bitmoji to look exactly like me:

Where was I?

The Big O with his drone

Genes are mighty strong

Family meals

The best-looking incoming freshmen in any university anywhere

My amazing 81 year old father with Henry

Beautiful Atlantic ocean

We're a big crowd on the beach (and those giant houses behind are not ours)

My sexy, adorable sister who fights in her home state for safer gun laws. You don't want to mess with her.

Look closely at what's in the lagoon right behind my parents' house. Scroll down for details.

I love this picture of me and my father. 

What I wore in lieu of actually screaming at every single person I saw in South Carolina that I suspected of being a Trumper

I showed them, right?

Ha. Just kidding. I felt desperate sitting out there on the hot beach, under a tent, watching our beautiful children play volleyball. I felt angry and nervous and anxious all afternoon on Tuesday, and when I checked my email and saw that the Senate was taking up the debate, that McCain had voted yes, I stood up and stormed off the beach and back to my room where I sat for the next hour, furiously dialing people through my Indivisible resistance app, speaking to constituents in West Virginia and Nevada. One 83 year old woman told me that she'd called Senator Capito every day for weeks, but she didn't think her voice mattered. I asked her to please call again, that her voice did matter. I hope it matters, I said. The calling helped me to feel sane and productive and less anxious, but can I tell you something? This whole thing has made me, generally not an anxious person, a very anxious person, often filled with dread and -- yes -- anger. The thing is that it's not only about me, about Sophie -- it's about so many of the people I've met over the last couple of decades and what I've learned about community and disability and vulnerable people. It's existential.

My beloved sons and I in the best light of the day

In the lagoon behind my parents' house

It was also Henry's 19th birthday, so we celebrated by going to a Mexican restaurant.

I won't show you the picture that my brother-in-law took of the my sistahs and I shooting birds into the camera. As Mary said when I showed her, I'd party with ya'll.

Speaking of Mary, I hope you wish her a happy birthday because today's her birthday and I love her to pieces.

What else?

I arrived back on the left coast and walked down the baggage claim and out into the not-humid Los Angeles air and to my love.

Waking up this morning to the good news -- well -- it was awesome. I know we'll still have to fight, but I'm ready and willing. The relief that I don't have to worry that Sophie's health insurance will be ripped away or her access to MediCal messed with, at least for now, is indescribable.  The Turtle put his head back in the shell, 45 is still tweeting insanities, and we've got a dude in charge of 45's communication who seems like he stepped out of the show Entourage. There's a lot going on, right?

Monterey Breach: A Drone Short Film

These two have been friends since preschool.

Once upon a time, a little boy named Oliver made a whole lot of money selling lemonade on the corner of our street. He worked diligently and saved nearly all of it and began bugging his mother about spending that money, all at once, on a drone. His mother declined because that's a ridiculous thing to spend money on and you need to save that for college until, years later, it was clear that Oliver actually did want a drone and intended to do great things with it. It's my money, Oliver said. You're right, she said with a sigh. He bought the drone.

Oliver and Joe have been making incredibly inventive films for years. Oliver is game for acting and doing the bidding of Joe who is a preternaturally talented filmmaker and editor. You really can't believe how good Joe is until you see his stuff.

The Bird Photographer took Oliver up to Monterey this week to do a little drone photography and some whale watching. I'm not going to say how jealous I am (for obvious reasons), but Oliver -- on his first real whale-watching trip -- saw just about everything a person could dream of seeing on a whale-watching trip. Breaching whales, lunge feeding,  Great White sharks, dolphins, etc. etc. I have yet to see a whale breach, and I've gone out about eight times which is privilege enough. I just love this state I've adopted as my home. It is truly glorious, and I'm so glad that my children are California-bred.

Oliver and Joe made this short film that they titled Monterey Breach: A Short Drone Film. It blew my mind so much that I think I'm going to have to lie about how I tried to get Oliver to buy that thing for years because I just knew he was going to make something great of himself with it. I told Joe that when he's a famous filmmaker, I'm going to tell everyone that he made short films with Oliver in my little bungalow long ago.

Make it full screen, turn up the volume and be wowed:

#gratitude

Are you thinking jesus! When's this woman going to express her gratitude for the deep blue sea and the great blue whales? Here it is, my gratitude for the deep blue sea, for the coast of California and the planet's largest mammals that swim in the waters.

I saw five blue whales a week or so ago, not one or two or even three but five. Their bodies are sleek and shone in the sun. Vast.

Here it is. My gratitude for dolphins, for the thousands of them raced us, my efforts to not anthropomorphize so difficult because surely they smile and play and love?

Here it is. My gratitude for the island fox

for a dusty hot day

for a rocky beach where I lay with a book on a blanket, a stone under my head and in the small of my back

for a painted cave that smelled of damp and green. Lichen, the word

For white flowers that grew out of rock

for red crabs busy in clear water

for pelicans overhead

for this man for us