Knees and Pluto and Pascal

Scientists react to images from Pluto

I flipped through my emails early this morning, the ritual of deletion and clicks. I read a horrifying beginning of an article about Tinder in this month's Vanity Fair -- was relieved when I couldn't go further as a non-subscriber. I scrolled through a few tweets about last night's Republican "debate" and resolved, again, to not pay attention to anything having to do with those men and women -- did you hear me say ANYTHING? -- until September of 2016. I read somewhere that this is how they do it in France, so barring any demands to re-read Proust, I'm French for a year. Little threads of despair, hovering. My knee hurts, and I bet it's osteoarthritis, and I bet it's because I haven't exercised enough -- well, let's be honest -- my entire life. There's also the age factor and the curious, horrible way things happen when you get older -- not gradually, but all       of          a              sudden. Hairs sprouting from chins, a big toe that crackles, jowls and a front tooth that appears to be hearkening back to pre-orthodontia buck tooth days. Then I saw that photo, and tears streamed down my face (there's no original way to write that) because, really, we're all just hanging out here for a short time and the universe is vast and unknowable. As my compatriot Blaise Pascal said in the 17th century (remember I'm French for a year), vous admirez toujours ce que vous ne comprenez vraiment pas.*













*You always admire what you really don't understand.

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.

Tiny Particles

That was a headline in this morning's paper, and it just struck me. That's all -- it just struck me. So much that we think we know -- in fact, everything we think we know, lands up being debunked. This headline, that I glanced at on my way to the bathroom (I'm one of those people who realizes they need to pee well before they actually pee so that they find themselves really needing to pee well after they first noticed) provoked so many other thoughts:

1. the fact that Sophie is responding to marijuana after unsuccessfully ingesting twenty powerful synthetic drugs in nearly as many years (really, what the hell? Couldn't THEY have figured this out sooner?)
2.  how often THEY (because it's always THEY, right) reverse positions on what is good for you and  what is bad. For instance, I know you've heard that having a large ass helps you to live longer than a skinny one (I'm living forever, apparently), but did you hear the latest news that eating a handful of nuts a day will help you to live longer? So much for counting out those cashews on Weight Watchers.
3. how we're pressured to trust Science unequivocally
4. how we often do trust Science unequivocally
5. how we're browbeaten for expressing our doubts (think vaccination "debate")
6. how weird and inexplicable the universe really is (the typhoon in the Philippines, tiny particles upending the universe, men in general)
7. how weird and inexplicable human beings generally are (despite "evidence" to the contrary, there are still those diehards who believe Adam and Eve just appeared one day in a garden)
8. how weird and inexplicable my own brain is (that thoughts keep coming, willy nilly, prompted by no less than one headline and the urge to pee)
9. how tiny particles can upend one's universe in general (evidently the world of astronomy is rocking)
10. how Blake wrote in 1803 To see a World in a Grain of Sand/and a Heaven in a Wild Flower/Hold Infinity in the palm of your hand/and Eternity in an hour.

Reader, what's upending your universe today?

Henry, Pedicures, Medical Marijuana Update Number 31,276,459 and the Full Moon

That's my beautiful boy, getting ready to jump down and pick up the screen that fell out of the window. He came home early from school today, and I can't even begin to tell you how E A S Y it is to hang out with him.

I did some hard-core cleaning today -- mainly in the boys' bedroom. They have an incredible amount of stuff -- let's be honest and call it shit -- piled in every nook and corner, so I got a big box and literally swept it off the shelves and into the box. I'm going to tell them to go through the box and only remove the things that they really, really value. Something tells me that most of it will appear, again, on the shelves or in the drawers or under the bed, but at least, now for one day, the room is pristine.

I also walked around the corner and got a pedicure. I splurged and did the hot stone treatment, and while my legs and feet were being massaged with hot black rocks, a woman called me and we talked for the rest of the time about medical marijuana, about CBD butter and tinctures and how it's helping her son and how everything, everything is moving toward it. We're going to meet next week, and she's going to let me try what she has been using for her eight year old son quite successfully.

The universe is abundant.

The Pediatric Cannabis Therapy of California Facebook group has a whole thread of comments about the upcoming full moon, Santa Ana winds and increased seizures in our kids.

The universe is strange.

I might be insane, but as I told a friend, I'm calmly insane.

The universe is constantly trickling through my fingers, and I can't hold onto it which is probably just right.