Jake Gyllenhaal Just Fixed My Internet

The view from the rooftop of my CVS buiilding
Hollywood sign in upper left corner
my sexy, white Mazda at right

I haven't been around these parts the last few days because  the internets went down. We had to get all read books, do jigsaw puzzles and try to navigate the world without wifi, and good Lord, ya'll. I hate typing anything on my phone, and god forbid I should write anything long-hand like days of old, so I actually caught up last night with my chapter-a-day in War and Peace. I'd fallen behind about a week, and just like it goes with exercise, I was afraid that I'd never get back on the wagon. Now, I'm about caught up with the reading, and I'm thinking I should finally go to this Pilates class that I visited the other day and get back on that wagon.

This morning, after dropping Sophalonio off at school, I stopped at one of my favorite little restaurants and had avocado toast with poached eggs on top and a latte, made with whole milk. There were only a few people in the place, at a couple of tables, but each of them was talking about a script or lines or production. I've lived here for eighteen years, and it still strikes me in the funny bone that people are just so LA, that they don't have regular jobs but talk about movies and television no matter where you go. Yesterday, I went over to the CVS to pick up some of Sophie's poisons and took the above panoramic shot of part of my neighborhood and the Hollywood hills. That might look pretty urban, but when I drove down to Irvine for My New Job, all I could see were snow-capped mountains ringing the iconic skyscrapers of downtown. Again, it's weird to me that I actually live here, and I do love it so.

Speaking of Hollywood, the AT&T guy who came to fix my internets strolled into the house in a pair of cowboy boots looking exactly like a combination of Brad Pitt in Thelma and Louise and Jake Gyllenhaal. His ridiculous beauty reminded me of the time Sophie was in the hospital at UCLA back in the days when I actually thought bringing her to the hospital would help the SIT U AH SEE ON, and the attending pediatrician walked in, a tall, long-haired woman about nineteen years old with super tight blue scrubs on and a nipped in the waist lab coat. I remember looking at her haggardly, wondering if we were actually caught in an episode of ER because there is just no way that any doctor should look like that on a children's ward.

Anyhoo.

The AT&T guy must have been a big smoker, something that I would generally be disgusted by, but damn. I generally don't even like cowboy boots because they remind me of Texas and certain conservatives, but this guy was so cute that I thought about calling all my matron friends and inviting them over. It was almost embarrassing showing him my router that happens to be in my bedroom. I think the way to deal with a younger man in the South is to say, I bet your mama loves you. I didn't say that, but when he left, I told him how much he looked like Jake Gyllenhaal and that I was going to invite all my friends over to meet him, and he smiled and said, Thank you, ma'am.

On On Being

I woke up yesterday morning to a long, kind email from a stranger who claimed to have read my writing on Krista Tippett's On Being website. I didn't know what she was talking about. Then I got a notice that someone had tweeted something I said, or should I say I got a tweet? I have a twitter account (is that how you say it?), but I have used it maybe four times. I have no idea what I'm doing reading or writing tweets. Or twittering. And then someone liked -- or is it favorited? -- that tweet. Or is it twitter? Oh, twat! In any case, I eventually made my way to the On Being site and saw that a post I wrote years ago was their featured blog post for the day and that they'd also posted many photos from my blog and the Extreme Parenting Video Project. My name was right on there, as was my picture and a little bio. A link to the ebook was there, too.

I'll make a long story short. I had no idea why all of this was published. I never received any word from the site that they were publishing my work, and here's the clincher: I have no memory of submitting anything to them. I wrote the editor and explained that while I was thrilled and honored to be featured, it felt weird to have not been contacted beforehand.

The internets are strange and wild, indeed.

The editor got back to me with an apology for their oversight in not contacting me. Evidently, I had submitted the piece, but I'm not sure when. Have I gone mad? Again, I have no recollection of doing so, and the piece was written in 2012, well before we embarked on the cannabis odyssey.

 The On Being website and recorded interviews are some of my favorite things generated online, and I have often felt that Krista Tippet might have the best job in the universe. So, wow. I'm honored and grateful to be included on the site.

You can read it here.

Feel free to tweet and twat and twank about it, too.

Cannabis Connection

Portrait of a neurologist using electro-stimulation
1862

I've got two things to say.

1.

I've said it before, and I'll say it again. Physicians who are obstructing their patients' desires to try medical marijuana for their children with refractory epilepsy are legion, and their intentions and actions are unethical. I'd go so far as to say that in some instances, they are killing children. Not a week goes by that someone doesn't contact me with their own story of stymied efforts to help their child or with a direct appeal for advice or help. I've stopped saying bullshit like, I'm not a doctor, but. I generally tell our story and then encourage the person to figure out a way to try CBD in whatever way possible. I don't say or do anything illegal or unethical, but I don't mince words. I direct them to those who are in a position to educate. I am empathetic, always, because my road has been twenty years long, and I know from where they're coming.

2.

The Internets are strange and wondrous and miraculous. I don't care what dire thing you imagine social media is doing to the universe. For those of us who have more important things to do than discuss what celebrities are wearing or whether or not Common Core testing is bullshit or how much praise is too much for your children, the internet, namely social media, connects us profoundly to one another and can even save lives.

Here's how it went a few weeks ago for me and a woman named Sally (her name has been changed for privacy reasons):

Eight years ago, Stephanie told me about Vicki.
Vicki told me about Jeneva.
Jeneva told me about Heather.
Heather told Sally about me.
Heather told me about Sally.
Sally contacted me.

Heather gave me your contact information because we are really struggling with our daughter's seizures right now. She is 16 and previously had been seizure free for 2 years!! Now we have been in status Epilepticus twice in a week that requires massive drugs to stop. It's a matter of time before she is intubated and takes her at least 4 days to recover from. I have heard so much about CBD oil and need to try this. Not sure what resistance I will encounter with her neurologist but want to arm myself with information. I was not even sure I could get it in xxxxx. I am very excited about this option and would appreciate ANY information you could offer.Thank you

I spoke with Sally:

I am sorry to hear about your daughter's struggles, and while my daughter does not have the type seizures that cause status, she has had uncontrolled ones since she was three months old (she's 20 now!). Sophie is currently on Vimpat, Onfi and CBD. We've been able to wean her from 1/2 of the Onfi, very very slowly and hope to get her off of it completely this year. Then we'll tackle the Vimpat. She has had a reduction in seizures of about 90% and has had some seizure free days and weeks for the first time in her life. I know that xxxx's rules are very different than ours and that you need a prescription for cannabis. I think, too, that the ratio of CBD to THC is higher as well, but I'm not certain. I suggest that you look into the Realm of Caring website, join it or register there as well as the Facebook pages. I have seen many comments and threads there from xxxx's, so you'd probably find some resources to help you. I can also put you in touch on FB with a woman who is treating her 37 year old daughter with Dravet Syndrome with CBD -- she lives in xx. You might also contact the woman on this blog (she remains anonymous). She is the mother of a teenaged girl with seizures who is using CBD as well. I'd add that when I read her blog and how the CBD is dispensed, amounts, dosages and ratios, I question it, but again, the rules/laws are different in xx. Finally, I have another blogger friend who lives in xx that is using CBD, I think, for her daughter (aged 23 or so) who has both seizures and autism.

Sally then wrote this:

Thank you! M is on Vimpat, lacosemide, clobazem(onfi), and now adding phenobarbital that she had an allergic reaction to 15 years ago. They hope she's outgrown it???!!! So many drugs, each one has its own side effects. Our neurologist today told me he will not support CBD oil because he has no proof it works and is not legal here!!!!! So frustrating. I still will pursue this because I have heard such overwhelming real life accounts of its benefit. I am not sure how to join the support groups. When I  click the links I get a page saying I do not have permission to enter the site. I am super excited to be able to hear xxx stories. Gives me great hope. How do I join those groups?Thank you.

I wrote her back with my support and encouragement.

A couple of weeks went by.

On Sunday Sally sent me an update:

Just wanted to give you an update! I took M to a Cannibus clinic against the neurologist and paediatrician!! They were not supportive - the opposite of that really. I begged my family doctor for the referral. She wanted to put M in the Hospice and pull all treatment. I begged for this saying then at least I know I have done everything. Well we started 17 days ago. We have not had one single seizure in 17 days!!!!!!!! So thank you from the bottom of my heart. Your help has given us another chance at life with M!!! She has had some significant brain injury due to the severity and frequency of the seizures. The only way we can move forward and heal is to get a rest from the seizures. We have that now. Hope it is onward and upward from now on!!! Thank you again for your help and advise.

I'm not a believer in the there's a reason for everything or even in an ordered Universe. I don't think there's a god who has some sort of plan and that the obstacles in our paths are put there for a purpose. I don't think Sophie is an angel who picked me for her mother or that I was given this particular burden because god knew I could handle it and just it and no more. If that's heretical to you, I won't apologize, and I have no problem with you believing otherwise unless you thrust those beliefs upon me. I believe, rather, in randomness and chaos and absurdity and maybe, just a bit, in entropy. I believe also in connection and love and hope. My connection to Stephanie and Vicki, to Jeneva and Heather, to Sally and so many like them is awesome in the truest sense of the word. I am awed by these connections. The universe is abundant, and I'm a tiny speck, a part of it only as it connects to you and you and you.

Vasquez Rocks on Aqua Dulce Road with Sophie

I took Sophie to Vasquez Rocks, off Highway 14 today. The park was on the sweet-sounding Agua Dulce Road, in the Sierra Pelona Mountains, about forty-five minutes from my house. I've lived in southern California for more than seventeen years, but I'd never been to this strange and majestic place. Not only a prehistoric site for the Shoshone and Tataviam peoples, I learned that the rock formations were used by California's most notorious bandit, Tiburcio Vasquez, to elude authorities.

I feel a little like eluding everything and everybody these days, particularly certain smug and citizen scientists on the internets. I imagine that if Sophie could talk or do anything more than hobble around with me, she'd be up for eluding people as well.

Given her inability to navigate, Sophie and I didn't see much of the trails that surround the rocks but we did have spectacular views. I let go of her for one moment to take the above photo, but visions of her stumbling and smashing her head made it only a moment. At the same time I realized with gratitude that at any other time in her life, I would have worried that she'd have a seizure and that I'd have to carry her back to the car or lay her down in the dirt until she was able to walk again. Trying cannabis last year despite the medical world's admonitions against it was a bit like eluding the authorities.

We sat under the shade of an over-hanging rock at one point and watched families scrambling up the sheer faces of the rocks ahead.

Hawks circled in the sky. An older Asian man sat down next to us, and the three of us sat, completely silent, in awe.

I carried on a conversation nearly all morning, in my head, with the citizen scientist on the internets who is so adamant about my "ignorance." A friend had emailed me that he'd looked her up on Facebook, described her to me, even down to the clothes her children wore. It's a strange, strange and big, big world.  I'm grateful that this woman's language, with all its intimations of fear and control, was finally silenced in my head by what I saw at Vasquez Rocks.

As Sophie and I wandered around where we could, I realized that I have no desire to climb to high places, to scramble up rocks and perch on edges, even if Sophie were able to join me. This afternoon, I had to look down and ahead, guide Sophie through some rocky spots. She looked down some of the time but rarely up. I wonder if she's oblivious and then I wonder if she's just soaking it all in. The breeze running through the scrub made branches sway gently, and that's what caught her eye. I pulled her onto my lap on another rock and rested my chin on her shoulder. I tried to imagine what she saw, what she thought, her language, her mind's eye.

It occurred to me that the constraint of walking and being with Sophie gave me the opportunity to not aspire to something else and that the thrill was in the eye, her eye, my eye -- not so much beheld but beholden.

Parenting, The Internet, Sex, Drugs and Rock and Roll

I know it's probably not in good taste to post a photo of myself in front of the vodka display at my local grocery store, however facetious, but I just wanted to let ya'll know that this is what I look like after an emotional discussion with my teenager** about the internet, Facebook, bad language, sex, drugs and rock and roll. Those of you who have a child with severe disabilities AND a child or two or three or more without might think with a teeny tinesy part of yourself that you're going to get a pass, perhaps, on the more uncomfortable parts of parenting a normal teenager. There might be a teensy tinesy part of yourself that thinks the Universe is sometimes ordered or that you have a divine sort of perspective, especially given the shit you've been doing or going through as an extreme parent. You might even think -- with a teensy tinesy part of yourself -- that the good lord above will give you a break and your non-disabled children are going to be a piece of cake. At least I did. Well, a teensy tinesy part of myself.

Call me silly, call me naive -- hell -- call me an incipient alcoholic.




**No need to feel alarmed. All is well and neither of my boys are in any trouble whatsoever (other than the damn laundry basket filled with their clothes is still sitting on their bedroom floor and not put away).