Realm of Caring Magic Night

 

I took that screen shot the night before last as I sat watching and listening and weeping and smiling through Realm of Caring’s tribute fundraiser. It was the one-year anniversary of Charlotte Figi’s death — Charlotte of the eponymous Charlotte’s Web cannabis medicine. That mighty child and her mother Paige, along with Heather Barnes Jackson, the Stanley Brothers, Ray Mirzebegian and many, many others changed countless lives, saved countless lives, including our Sophie’s. As one of the original families to use Charlotte’s Web, we were asked to make a short video to include in the night’s online festivities. 

Read more here.

Rest in Peace, Charlotte Figi

We are all bereft, gutted, filled with sorrow. Charlotte Figi, the daughter of Paige Figi, died yesterday of probable complications related to Covid-19. Charlotte was patient zero in the cannabis revolution, and Paige a mother, a friend, a mentor, a revolutionary, a life-saver and inspiration. All of our lives -- all of your lives -- has been changed by this young girl and her mother. That Charlotte should die of this cruel virus that seems to be just picking people off is bewildering and even surreal. In the epilepsy community, Charlotte's death is particularly tragic as so many of our hopes and dreams and certainly our gratitude and love is wrapped up in this child's soulful eyes and sweet smile. She is our child, too, and I think I speak for many when I say thank you to Paige and Greg and Matt and Max and Chase for sharing Charlotte with us.


Molta forza e coraggio to Charlotte's brave family. We will never forget your girl, the garden you planted, and the flowers that bloomed from it. We love you and hold you with our community -- Charlotte's web that you so beautifully spun and whose strands are stronger than loss and grief because they are made of love.

Writing, Respite and Denali

I'm still here in beautiful rural Washington. There's not much to do but relax and listen to the birds, putter around the beautiful house, wander outside and chat with the goats, read novels (Tommy Orange's There, There and Ottessa Moshfegh's Eileen), read some poetry (Marie Howe's Magdalene), eat a plum, eat a peach, let a corner of a chocolate bar melt in my mouth, suck on a Tootsie Pop and gaze at the Bird Photographer.

I haven't written much, but I've arranged and re-arranged my hundreds of pages into a sort of order. It took hours and hours to do that much, but a structure is finally, literally, at the tip of my fingers. My plan is to finish up in the next day or so and then, when I get home, re-type the whole lot and send to the editor as a rough -- extremely rough -- draft.

The Pacific Northwest in the summer is perfection. It was here -- or up in Victoria -- where I spent a week by myself only four years ago, a recipient of the magnificent Heather McHugh's organization, Caregifted. That week changed my life and opened me to the possibility of and hope for more respite from the life of caregiving that, while enormously rewarding and filled with grace, has also drained me of myself or the essence that keeps me vital. I realized then how important it was to seek respite in whatever way I could, to open myself up to the possibility of replenishment and to work just as hard to get that as I do to take care of my daughter. While I am aware of the enormous privileges I've been granted that others just do not have, I also remember the nearly twenty years without significant respite. I remember what it was like to have no hope for it.

We caregivers must get back to ourselves as if our life depended on it because it does.

photographer: Carl Jackson

Listen to the latest Who Lives Like This podcast -- a rousing discussion of nurturing the self with Paige Figi, the director of Coalition for Access Now and the mother of Charlotte of the famous Charlotte's Web cannabis oil. Jason and I interviewed Paige just a week before she climbed Denali, the highest peak in North America. Here's the link:

Who Lives Like This?!

Yeah. I know. Not all of us will climb Denali, even if we desired to do so. Yet, still, there's joy to be had no matter how you choose to find yourself.

As my friend, writer Chris Rice said the other day, Your book is your Denali.


Onward.

My NBC Dateline Notes and the Ode to Santos Dumont

Sophie at the late Chris Burden's Ode to Santos Dumont

First, and above all, how rocking cool are those Stanley Brothers? I know it's heretical, especially given their evangelical roots, but honestly, I'd be tempted to follow Jesus and the Apostles again if he were Joel Stanley and his band of brothers. That awesome female biochemist could be Mary to my Magdalene, too.

Secondly, how strong and rocking cool is that Paige Figi? And those women who lobbied the Virginia legislature? And their beautiful kids, the brave soldier with PTSD, the man with multiple sclerosis who threw his bag o'pharms on the floor?

You watched it, didn't you? If you missed the Dateline special, Growing Hope, you can still help out by supporting the Coalition for Access Now. Click on that link, and you'll be able to access your own legislators' emails and telephone numbers to express your support. I myself have just returned to the lobbying efforts. I had a hiatus, mainly because I despise lobbying and fundraising. It's very difficult for me to plead legislators to do the obvious. Unlike Paige and the women profiled on the show, I get stuck and fixate on -- well, for instance,  -- what appeared to be an entire Virginia legislature of white men in suits. Those guys did the right thing, but it's so hard that we have to literally beg for this stuff.

Sigh.

I'm girding my loins and calling the very estimable Senator Feinstein on Monday morning. She's decidedly not a white man in a suit, but she's said some worrisome things, and we need to tell her what we know. We need to share our stories. We need to plead with her. We want her to co-sponsor the Therapeutic Hemp Medical Access Act of 2015 (S.1333). Anybody out there who has an in to her office in Los Angeles or San Francisco? Please email me if you do.

Now let's talk about the proverbial thorns in the sides.

Thorn Number One in the Dateline special might be Dr. Amy Brooks Kayal. She's an epileptologist and the present head of the influential American Epilepsy Society. I recently read a letter she wrote to the governor of Pennsylvania, expressing her displeasure over any legislation favoring the legalization of CBD. At some point in the special tonight, she pointed out that parents are subject to the placebo effect and might be over-stating their children's response to Charlotte's Web. You might remember the doc at the Epilepsy Brain Summit that I sparred with said the exact same thing.

It's the Party Line.

I did the same thing that Mrs. Braddock did when Benjamin announced his marriage to Elaine.

The placebo effect argument drives me insane. I understand the power of the placebo effect, and I also find it interesting that the families who uproot themselves and move to states where cannabis is legal reportedly claim more success, but I question that research itself. Has anyone at the University of Southern California Neurology Department, other than my own wonderful neurologist, ever expressed any curiosity about the awesome success Sophie's had with CBD? Have they at UCLA where Sophie was treated for many years? Do they want to know? Has anyone done a study on revolutionary treatments and doctors' stubborn refusal to acknowledge change? When these doctors bring up the placebo effect, it stinks of patronization. I think of deer caught in headlights or steady blinking in the face of light. 

They're not used to light. Bless their hearts.

Later, I engaged a bit with some other thorns -- those whoo I guess are called "haters" in the medical marijuana community. These people are, ironically, in the community in that they have loved ones who benefit from marijuana, but they consistently put down the Stanley Brothers, Realm of Caring and Paige Figi. Their concern is that CBD-only legislation will hurt the larger cause of making whole plant marijuana legal. They have some valid points, but they're often strident and make wild accusations. I know they're wrong. Just two years ago, I was wandering around Los Angeles looking for a product to give Sophie here in Los Angeles. We're now about to push through, hopefully, a bill in the federal government that will deschedule hemp, making it accessible to every citizen in every state, regardless of that state's marijuana laws. It's a small step, and it doesn't solve the larger problem of making sure that accessible natural plant medicine, including THC, is available to everyone who needs it. Cannabidiol alone is not a cure for everyone. There is much tweaking, and some people only see success when they add in THC and/or THCa. Some people are on so many antiepileptic drugs that success is elusive. It doesn't work for everyone, but there are thousands of children who need to try the product right now, who literally can't wait for what I believe will be the eventual legalization of marijuana on the federal level.

Enough thorns.

Today, I took Sophie over to LACMA to see the late Chris Burden's installation titled Ode to Santos Dumont. The museum states that the installation pays homage to ingenuity, optimism, and the persistence of experimentation, failure, and innovation. Inspired by Brazilian-born pioneer aviator Alberto Santos-Dumont, widely considered the father of aviation in France, the kinetic airship sculpture was recently completed after a decade of research and work by Burden.

It's a strange and wonderful installation -- a sort of translucent dirigible that is put into motion in some complicated way and then floats around the room for a bit in a constant sixty-foot circle. Sophie and I stood with a crowd of people and watched the beautiful thing float around and around. We were all mesmerized. The explanation on the wall states that if the airship were to deviate from its sity-foot circle, the geometry of the tethers would force the balloon to turn in a smaller, tighter circle, which would cause the motor to work harder. The thing always seeks the sixty-foot circle, the path of least resistance or the sweet spot. 

How beautiful and resonant the Ode to Santos Dumont with Sophie, to this work we have ahead. 

May we all find the sweet spot.

Coalition for Access Now.

One Telephone Call: A Plea for Help

So, I had the great pleasure last night of texting and private-messaging with my friend Paige Figi, the mother of Charlotte (Charlotte's Web fame) and agreed to help push on Senator Diane Feinstein to co-sponsor Senate Bill 1333, The Therapeutic Hemp Medical Access Act.

I am crazy, I know, to do anything else, but honestly how hard could it be, especially when I have all of you out there to help me. 

Here's what I want you to do.

1. Call Senator Feinstein's D.C. office when you have a moment today and ask her to co-sponsor the Therapeutic Hemp Medical Access Act or S. 1333. 
2. Here's the phone number: (202) 224-3841 Tell the person who answers that this bill will provide access to thousands of families who cannot get this life-saving treatment for their children. The bill will deschedule cannabis-rich products/hemp from Schedule 1. It's a tiny step forward and a HUGE one for our community. Senator Feinstein WANTS TO HEAR FROM HER CONSTITUENTS, SO PLEASE CALIFORNIANS, STEP UP!
3. Don't forget to ask Senator Feinstein to CO-SPONSOR S.1333.

If you need more information or would like to help get co-sponsors in your state, here's the website for Coalition for Access Now. 

Some Television Worth Watching

Paige Figi, the mother of Charlotte, the little girl who inspired Charlotte's Web, sent us this link today. The Dateline episode referenced evidently has already gotten some good reviews. I hope you'll watch it or tape it or let everyone you know do so.

It's so hard to believe how this movement has grown in the past 18 months. It's wild, really, and breath-taking to be on the frontlines of a veritable revolution, to have left many of the Powers That Be truly in the dust.

But there's still more to do, and part of the doing involves educating. Help us.

Here's the link.

Safe Option for Seizures: Here's Something You All Can Do

A few minutes of your day can help to change things in this crazy old world. Here's what you need to do:


Watch the PSA

Recognize that it's a step forward in the ongoing medical marijuana conflict

Think about what Sophie would be doing if she didn't live in California.*

Think about what I'd be doing if Sophie didn't have CWHO.**

Think about the thousands of children and adults who need to have access to this oil and the right to try it.

Contact your federal representatives and tell them to support H.R. 1635.



Thank you very much.


Love,

Elizabeth and Her Tiny Little Mother Mind™

















ANSWER KEY

*   Most definitely seizing and drugged up with a higher risk of SUDEP
** Most definitely even more stressed out and ruined by enduring twenty years of watching seizures and giving 22 pharmaceuticals that don't work. Hopeless. I'd like to say that CWHO for Sophie has made me thinner and more beautiful, but that wouldn't be truthful. It has made me smarter, though, and more relaxed and hopeful.

Realm of Caring Newsletter

It's the last day of the year, and in lieu of the usual lists and hearkenings back and rueful confessions and regrets and moans and groans and hopeful looking forwards, I'm going to leave the link to the Realm of Caring's most recent newsletter. Most of you who come by here (thank you!) daily know that the Realm of Caring is the non-profit organization that has been instrumental in educating the public about the positive effects of cannabis, particularly for those children who have refractory epilepsy. What you might not know is that there is a fairly sizeable group of people (in addition to those with conservative "values," the government's anti-drug zealotry, the medical world's obduracy or those who are just plain ignorant) who not only object to cannabis for the usual reasons, but who object to and accuse the people from Realm of Caring, including the Stanley Brothers (who grow and produce Charlotte's Web), Paige Figi (Charlotte's mother) and even little Charlotte herself, as charlatans.

They've all been subject to negative and venomous remarks, to untruthful accusations, to hate mail, to harrassment and even death threats. Yes, even little girls get death threats when their mother is working tirelessly to get medicine to other children like her own. I think the only way to counteract the naysayers, the crazies and the angry is to provide the truth of one's own experience, and our truth is that Realm of Caring has been nothing but supportive and professional in its dealing with us and that their "dealings" are nothing like the usual business of epilepsy. I mean that. Of course, there's also the fact that Sophie has dramatically fewer seizures going into 2015 and is on nearly 50% less medication than she was going into 2014, all due to Charlotte's Web and Realm of Caring. Despite its prodigious capacity, my imagination stops short at expressing what this year might have looked like if Sophie hadn't tried Charlotte's Web.

Here's the link to the newsletter, filled with exciting news and infographics as well as interesting articles that will educate you about what's going on legislatively. Oh, and there's a blog post included written by yours truly -- an incredible honor for me!

Highlights and Updates From the Realm of Caring 

Go Whoopie, Paige Figi and Joel Stanley!

Watch the link from this morning's The View, here.

What can you do to help us? ABC wasn't allowed to talk about "the politics," of medical marijuana, but many of us are working hard to get a bill passed in the United States Congress. Titled HR5226, the bill amends the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of marijuana. The bill does not impose additional restrictions on those states who have already legislated the use of cannabis and is an incremental approach to provide relief to those suffering from ailments and diseases that could benefit from CBD oil and therapeutic hemp like epilepsy, severe seizure disorders and other neurological impairments.

By moving the non-psychoactive supplements into a separate category, this bill will not only provide quicker access to patients, but will allow these safe supplements to be produced on a mass scale under agricultural regulations while keeping the price affordable for patients.

It simply makes no sense to keep these products, which have no potential for abuse, lumped in with psychoactive compounds that are, and likely will be for a long time if not forever, strictly regulated.

You can write your congressman or woman and ask them to support HR 5226 -- The Charlotte's Web Medical Hemp Act 2014.

From a California mother and advocate:

This is what prompted HB105. We recognized the many needs beyond epilepsy. We did our best. Our best made us the first state in the country to pass this type of hemp bill. Now, we're asking the US to do the same via HR5226. Both Congressman Stewart and Bishop have co-sponsored along with some 30+ other Congressmen. Send a respectful email to your Congressman asking him or her to co-sponsor HR5226.

The bill is brilliant. All the it does is separate the definition of hemp from marijuana based on THC levels and removes CBD, a natural derivative of the cannabis plant which doesn't produce a high, removes both from scheduled drugs.