PSA For All My Lurkers and Anonymous Folkx

"Here all is strange"

I was feeling beside myself  over the weekend. I got in my car and headed north on the PCH toward Malibu and turned around just about where Pepperdine sits so I could make my way back home to my regular, blessed and somewhere between a Monty Python comedy skit and a Samuel Beckett absurdist drama life.  Silly Walks. The Office of Arguments. Happy Days. Waiting for Godot. The ocean was on my right as I headed south and it led, as always, out to forever. I pulled over to the side of the road and slithered out of the car as other ones whizzed by me. I stood then, on the side of the road, on some rocks and looked out to sea (that phrase looked out to sea) and contemplated the strange world and my own insignificant place in it and the outsized emotions that I've been feeling about everything, knowing nothing. Knowing nothing and knowing more of nothing by the day, it seems. I looked down at my feet and saw this mermaid etched into the rock. Really. Beside myself.

That is what I find so wonderful, that not a day goes by....hardly a day, without some addition to one's knowledge however trifling, the addition I mean, provided one takes the pains. 
Samuel Beckett, Happy Days

St. Louis lawyers,  Patricia and Mark McCloskey,  defending their folly/home/castle/domain/wayoflife 

In today's Reign of Terror-wear, we have striped boat necks, clam diggers, pink polos and belted khakis. I know these people. We (we) know these people.







Back to my PSA for all my lurkers and anonymous folkx:

Black Lives Matter is not a terrorist organization. I imagine you have never really explored what the organization's mission is, so I urge you to do so. Here is their website: Black Lives Matter. Here are some of the statements on their website about their founding, their mission and their intent that jump out at me, a 56 year old white mother of three, pastry cook, English teacher and disability advocate:

We are guided by the fact that all Black lives matter, regardless of actual or perceived sexual identity, gender identity, gender expression, economic status, ability, disability, religious beliefs or disbeliefs, immigration status, or location.

We make space for transgender brothers and sisters to participate and lead.

We are self-reflexive and do the work required to dismantle cisgender privilege and uplift Black trans folk, especially Black trans women who continue to be disproportionately impacted by trans-antagonistic violence.

We build a space that affirms Black women and is free from sexism, misogyny, and environments in which men are centered.

We make our spaces family-friendly and enable parents to fully participate with their children. We dismantle the patriarchal practice that requires mothers to work “double shifts” so that they can mother in private even as they participate in public justice work.

We disrupt the Western-prescribed nuclear family structure requirement by supporting each other as extended families and “villages” that collectively care for one another, especially our children, to the degree that mothers, parents, and children are comfortable.

Again, my Lurkers and Anonymous Folkx.

Again, #BlackLivesMatter is not a terrorist organization. I have contributed money and am committed to their purpose. I am not a terrorist, and no one I know supporting the movement is one. We are not brainwashed. We are marching or protesting peacefully with our whole bodies. The work of these women and men is profound and awe-inspiring. I am grateful to be listening and learning about the movement and to bring my own passions and experience standing up for the vulnerable to the table. I am blessed to be on what I believe is the right side of history, as they say. 

To have been always what I am - and so changed from what I was. 

Samuel Beckett, Happy Days

Surfing Around With Admins, Internecine Wars, Opioids and Arthritis

Given that it's nearly 11:00 Pacific Time, and most of you are already in bed and might be reading this tomorrow morning, let's just surf around tonight.

First of all, did you know that the FDA recently approved the use of Oxycontin for patients aged 11 to 16? Unless you've been living under a rock, and that's perfectly acceptable given what's going on in this crazy old world, oxycontin is a long-release painkiller that acts upon the brain like heroin. Here's the statement, reported by NBC news:

Dr. Sharon Hertz, director of new anesthesia, analgesia and addiction products for the FDA, said studies by Purdue Pharma of Stamford, Connecticut, which manufactures the drug, "supported a new pediatric indication for OxyContin in patients 11 to 16 years old and provided prescribers with helpful information about the use of OxyContin in pediatric patients.

Cue Mrs. Braddock's laugh.


Well, you know where this is going, right? I'm not going to put down anyone who wants to alleviate the suffering of a child in pain, but reeeeeeeeely? Raaaaaaaaaaahly?

As you know, my tiny little mother mind™ has been working overtime with countless other minds, far greater than my own, trying to lobby and persuade The Powers That Be that the efficacy of Charlotte's Web, of cannabis, of medical marijuana, etc. is far stronger than anecdote and certainly not attributable to the placebo effect, that it's a plant that's been used for thousands of years, that there are studies -- oh you know what I'm saying.  But hey, what do we know? What do they know?

Yesterday, I visited a prominent orthopedist in Beverly Hills, a young and handsome doctor who probably replaces the knees, shoulders and various body parts of a plethora of celebrities given the location of his office. Last week I developed a bum knee overnight, was driven, quite literally, nearly to my knees one afternoon with a stabbing, horrific pain, a sort of grim reminder that yes, Elizabeth, you are turning 52 years old on August 27th and have taken for granted your solid southern Italian peasant ancestry and were over-confident that these strong genes were somehow going to protect you from the vagaries of age. To make a long story short, my right knee has a touch of The Arthritis, but not enough to warrant any sort of treatment, which given that it'd be one of those gigantic steroid shots that I understand work but that actually spark up the primitive part of my brain that recalls injecting high dosage ones into my daughter's baby legs two decades ago -- I declined. I did ask the good doctor, though, about cannabis and its anti-inflammatory effects and if he'd heard about any of that. He gave a short, impatient laugh, waxed on a bit about how the claims that it cures everything! couldn't be taken seriously and that there wasn't any research, yadda, yadda, yadda.

OK.

The weird thing is that this headline:

FDA Approves OxyContin for Children as Young as 11

(read the whole article here) just doesn't surprise many of us and turns our already cynical and tiny little mother minds™ into tiny, little obdurate bricks. Show me the studies -- double-blind, placebo controlled, long-term studies of children.

Let's catch another wave, shall we?

Back on the ranch -- the marijuana ranch, that is -- I got into a little sparring with the self-described admins of a group on Facebook called Pediatric Cannabis Therapy. These admins (and really, why do we have to shorten the word adminstrators to admins?) decided that discussions about Charlotte's Web Hemp Oil (CWHO) and the Realm of Caring (ROC) are no longer allowed. I wish I could quote the rest of the message that they posted, but that wouldn't be ethical for a closed Facebook group. Suffice it to say that it was riddled with not just grammatical errors (which, admittedly, drive this tiny, little mother mind™ batty) but vindictive statements and lies pitting advocates of CBD legislation against those who hope for whole plant legislation. First of all, these two groups need not be mutually exclusive, but according to Pediatric Cannabis Therapy's new rules, they are. The amount of work that Paige Figi, the Stanley Brothers, Heather Barnes Jackson and a virtual army of volunteers in nearly every single state in this country has done in a a very short amount of time -- to help sick children get access to medicine -- is nothing short of astounding and admirable. CBD-only laws are not perfect ones, and most of us believe that they are but tiny steps toward a larger awareness of this plant's many benefits. It's been more than 80 years since marijuana was basically forced underground for political and economic reasons, and during the last sixteen months, enormous progress has been made by pretty desperate women and men whose children's lives are at stake.That being said,  members of the Pediatric Cannabis Therapy group were warned not to discuss Charlotte's Web by name or they'd be asked to leave the group. Insults flew for a bit and while I dropped in here and there (you know, surfing the waves, trying to stay cool, look cool), I finally unjoined the group. The crazy talk has happened before, and I just can't be bothered with it anymore. While perhaps boring to those of you who have no interest in The Marijuana Wars, today I wanted to suggest that those of you who do have an interest should probably avoid the Pediatric Cannabis Therapy Group for anything but the lowest form of entertainment -- a sort of Monty Pythonesque Office of Arguments:



I will say that many hundreds of decent people exchange valuable information there in spite of those pesky admins destroying the synergy (another ridiculous 21st century word that they didn't use but that bugs me so much I thought I'd throw it in there with the dirty bathwater), so if you decide to stay in the group or choose to join the group, I advise you to steer clear of The Admin Who Is Not a Beach Boy or certainly don't talk directly about The Product That Cannot Be Named.





After that shredding, I'm prone out.

Cowabunga!

Bougainvillea, Conservatorship and The Ministry of Silly Walks

I yanked my car hard to the right, parked it and jumped out to take this photo. Pink, shocking pink paper -like bougainvillea against a blue sky. I just drove back from Pasadena, where I attended another conservator clinic. The foundation holding these clinics and helping us to gain guardianship of Sophie is incredibly efficient and well-organized. It's also free. Praise the good lord on that one. The universe is abundant. Basically, we're given a folder with stacks of paper, documents that we have to go through and sign, one after the next. When we're finished signing, we're told where and when to show up next. The people sitting around the table are Hispanic and Vietnamese, African-American and Australian. We all have a child, recently turned eighteen ,who for various reasons cannot make decisions for herself, and we all share the rueful smiles and sighs that those caught in interminable bureaucracy learn to sustain themselves. No one argues when the elderly volunteer woman tells us not to open our packets until she tells us to do so. The Husband, Sophie and I will make our court appearance in June, but before then, Sophie must be served a petition, a stack of papers, basically, that someone over eighteen years of age must hand to her. Literally. The elderly lady demonstrates this particular course of action with a young man in a wheelchair in the room. She takes the stack of papers, says the boy's name -- he is busy, twirling, twirling, twirling a small piece of paper -- and places the stack in his lap, where it rests for a moment before the young man brushes it lightly with his fingers. The lady next to me looks confused and turns toward her interpreter. I imagine her culture prevents her from grasping the irony of the situation, and I imagine the interpreter breaking through irony to express the literal. You must have another person, over the age of eighteen, hand the documents to the conservatee, the elderly lady states again, and the rest of us nod our heads. That person must then fill out this document, she continues, and we all flip through the next carefully clipped set of papers, and mail it back with this envelope. 

The clinic takes little more than an hour, and we each leave with a manila envelope stuffed with papers. My anxiety about this process has turned, quite dramatically, into resignation and even amusement. To tell you the truth, I'm actually looking forward to asking one of my friends to serve the papers to Conservatee Sophie. I intend to be the Minister of Silly Walks when it's time to drop that set into the mail.

Sophie World

I got this photo today from Sophie's teacher with the following email:

After a very long walk, a community trip and a cooking lesson, Sophie is just plain sacked out!

Sometimes I worry about Sophie at school -- well -- not sometimes, but more like nearly all the time. We parents of children who are non-verbal and/or completely defenseless in a myriad of ways take a certain leap of faith -- some might call it insane -- when we drop them off for six to eight hours with strangers or entrust them to school-assigned nurses and aides. While I've actually learned to at least understand the merits of the medieval chastity belt, I do believe Sophie to be safe at school, and I know that her teacher and aides do a bang-up job teaching and caring for a diverse group of special education students. My expectations for the gigantic morass that is the Los Angeles Unified School District are definitely zilch, though, and I've long let go of the legalese in Sophie's IEP, even caring whether or not her "goals" are being reached. There's only so many years when learning to feed oneself with maximum assistance is something for which to fight tooth and nail. What I'm grateful for, though, are these snippets of her life there that her teacher periodically sends me. They reassure me that Sophie has a life at school that is rich with activities and friendships and care.

Tomorrow, I'll be attending a workshop on conservator/guardian issues. Sophie will be eighteen years old in March -- good lord! -- and it's time for her to go out on her own and make her way in the world.

Just teasing. I'll no doubt learn about how to become her guardian without exploiting her rights as a human being. Stay tuned for what I imagine will be some Monty Pythonish moments as I navigate yet another system. I'll end here with a clip from a movie that my friend Jeneva recently posted on her FB page in anticipation of her son's IEP. I think it pertains to the parents' perspective dealing with any of the systems we encounter (insurance, medical, education, social, etc.). And it made me laugh out loud.

Friday Surf Report -- Things I Like

• There's a common theme running through many of my posts, and that is one of escape. I'm just about dying to escape, actually -- perhaps to one of the cabins featured on freecabinporn, like this one in Finland. No offense, but I don't want company. You'll have to pick your own porn.

• My friends Erika of The Flight of Our Hummingbird and Phil Dzalio of Healing, Empowering and Thriving continue the struggle with Amber, The Girl Who Would Insist on the Distinction Between Non-Persons, Humans and Persons Despite Being Admonished By Persons Old Enough to Be Her Mother, Wise Enough To Be Shamans and Angry Enough To Rip Holes in the Ozone. Erika, who is not only brilliant but incredibly funny, told me that her comments  to Amber (that were possibly the longest comments known to the blogging world) on Amber's website, where she proudly carries on the discussion using all the knowledge that her recent Bachelor's degree in Philosophy has gotten her, demonstrated her (Erika's) own commonality with the None Shall Pass Knight of Monty Python's Holy Grail. I think it's an apt comparison for many of us in the disability community who just can't give it up. Our formidable strength and resilience, though, is only as strong as our ability to not take ourselves seriously. We do have the most amazing senses of humor, if I do say so myself.

• I'm savoring the last pages of The Hare with Amber Eyes by Edmund De Waal. I've written about it before and highly recommend it.

• I love children's books. I really love vintage ones. I really, really like this blog.

Sunday Restraint

Sometimes the only thing that stops me from entering the fray are things like this:



Thanks to my friend Claire from life with a severely disabled child, who posted this video yesterday, I've been able to peer at myself with a microscopic lens and perhaps shed that narcissism and egotism (for a bit, at least) that drives me toward argument, even when it's absurd.

And how amazing and pre-The Office was Monty Python?