Cannabis Revealed

Dr. Bonni is Sophie's doctor, my cannabis mentor, my advisor and my friend. Her long-awaited book, Cannabis Revealed was recently published and is available for purchase on Amazon as well as CreateSpace.The book is expensive, but it's essential reading, and I encourage any of you who have an interest in cannabis as medicine or who are using cannabis as medicine to add it to your library. First of all, this is a serious book that is thoroughly researched. It is as much directed toward professionals as it is toward laypersons, but the writing is clear and informative.

Given the number of emails I receive a week from strangers looking for more information or for advice on where to start, I am just thrilled to now be able to recommend Dr. Bonni's book. Cannabis Revealed provides a clear history of the plant, an in-depth discussion of the endocannabinoid system, the safety profile of cannabis and medical risks of cannabis and then an exhaustive and thorough discussion of how to use cannabis medicine, including dosing. The book also discusses how cannabis can be used to treat specific medical symptoms and diseases, providing interesting stories of real patients that Dr. Bonni treats, including our Sophie! You will be informed and inspired by this book -- the next best thing to actually having Dr. Bonni as your doctor.

Lazarian Mermaid

this photo was not staged

You know how it goes. No matter how hard I try, I can't shake the southern Italian superstitious woman in me, so I'm going out on a limb,  and stepping out to take a risk, plus throwing in all my cards, and working every cliche in the book to say that Sophie woke up this morning like some kind of Ripette Van Winkle. She was lying in bed exactly as pictured above, looking straight up at me and humming. I should preface this by saying that, up to this morning, she has been just this shy of catatonic. That's not hyperbole. I've been in when Sophie's not well, Mama's not well mode for a few weeks, a familiar condition, off and on, that I've experienced for Sophie's whole life despite all the cultural admonitions to not tie one's identity to one's children. I threw out most of that stuff along with the book What to Expect The First Year. That book literally went tumbling down the garbage chute from the fourth floor of the walk-up where we lived the first hellish year of Sophie's life. The admonition to not allow yourself to be subsumed by your child, along with put on your own oxygen mask before putting on your child's and attend to your marriage before your children are perhaps wise and fitting, but hell if I haven't failed at both over and over and over.

Any hoo.

I feel like a new woman this morning because Sophie actually woke up making her customary sounds (she's been primarily moaning or been silent for the last couple of weeks) and looked right at me when I went in to her this morning. She was also able to WALK into the kitchen and ate her breakfast easily. She did not have a big seizure or five big seizures. She was positively cheerful.

I'm going to shift the southern Italian peasant mentality of jinxes with an attention to Gratitude for the Present. This means that I am perfectly aware that this good morning could turn on a dime (another awesome cliche), Sophie could sink back into catatonia and I to the Overwhelmed With Grief and Anger But Still Putting On a Zen Face Woman. Right now, though, she's good and I'm good. The people of this shitshow do nothing better than living in the moment.

Reader, I imagine you are wondering why Sophie has had this turnaround? I have no real concrete idea, but I am going with the fact that she was OVER-MEDICATED. Here's the thing. Sophie came home from the hospital in late October on three times as much benzo as when she'd gone in. This was to "compensate" for the ripping off of the Vimpat that was giving her hives (although the docs said it wasn't, yet still ripped it off so go figure). Increasing the Onfi was something I agreed to because there are some interesting studies about the combination of Onfi and CBD. CBD can elevate Onfi levels and perhaps the increased Onfi is what helps to control the seizures? What I'm thinking is that Sophie's Onfi levels were periodically sky-high and causing the horrendous side effects she was experiencing (ataxia, difficulty swallowing, lethargy, CNS depression, excessive drooling, inability to walk). At the same time, since she's been on the drug for the last nine years, at one level or another, she is habituated to it and therefore sees very little seizure control. Basically, being on a benzo is a clusterfuck of enormous proportions. I was texting a fellow seizure mother this morning about it:

What a fucking shitshow and goddamn clusterfuck, is what I said. I'm not going to apologize for the foul language because it's entirely appropriate. I also told her that while I was going to work on weaning more of the benzo, I wouldn't wean myself from cursing about it.

In fact, I said, I'm titrating up on the cursing.

I'm going to have to figure out what the perfect sweet spot of benzo and CBD is, and that'll take some time. But hey! I have all the time in the world if I put that oxygen mask on first, right, and take care of myself (as this Australian article emphasizes).

Learning Not to Swear (Do I Really Sound Like This?)

Hey ya'll! This really cool guy, Ted Lyde, asked me to come and have a conversation with him. This morning we talked for over an hour about all sorts of things.

You can listen to it at this link.

This Is It

It's been a week, dear people, since I've updated the old blog. Since then, I've seen tens of thousands of migratory monarch butterflies clustered in a eucalyptus grove in Pismo Beach. I hung over a fence overlooking a narrow beach and the gleaming Pacific, watched fighting male elephant seals, mating elephant seals and brand-spanking new baby elephant seals near Cambria. I stood and watched with tears in my eyes as the sun sank below the horizon and threw the most incredible blues and pinks and oranges into the California sky. You should come out here and witness a California winter sunset. Trust me. I'll post pictures of the mini-getaway at some point, but you can also follow me on Instagram or even Facebook, if you don't already. I post a lot of photos there.

Here it is 2017, and I neglected to wish you Happy New Year's Day.

Happy New Year's Day!

I wanted to write but felt reluctant to share those glories without also sharing what seems to be an ongoing thing with Sophie. I keep hoping for things to get better, but they are not. I'm not sure what's going on. Sophie is not sick. She is not having more seizures than usual. She is just generally drained of vitality. I honestly don't know what to do and it's been my experience that when I don't know what to do, it's best to wait with an open heart and mind for direction. This does not mean that I am avoiding wise counsel -- that of doctors and otherwise -- but it does mean that counsel can come from unexpected places and that I have to get out of my own way to receive it. Does that make sense?

It's a weird thing to wonder if this is it. If my anger were a crow it would be circling round the neighborhood making a ruckus with its kind. Looking for trouble. It's going to piss me off if I have to actually watch Sophie decline. A murder of crows.

I'm tired of this. It.

Dr. Jin came to the house yesterday morning to treat Sophie. Dr. Jin is our Chinese doctor who we've consulted since I was pregnant with Oliver, sixteen years ago. I haven't talked to her in a year or so, and her name came into my mind when I was meditating one morning. She made a house call. She took off her boots outside of Sophie's room, tiptoed in and sat on the edge of her bed. She spoke softly to Sophie and to me, examined her tongue and felt her pulse. She treated her with needles and discussed some tonic herbs that we might try. She insisted that Sophie will get better and that she will help to bring her back into balance. I believe her. She reminds me without saying anything in particular that all I need to do is take care of Sophie. She reminds me of the honor it is to take care of Sophie, to take care of a fellow human being.

I am struck by the great disparity between the western medical world as I specifically know and perceive it and the healing that Dr. Jin brought to the house. I have a $150,000 EOB lying on my desk from the last time that I brought Sophie to the hospital to be treated. Most of that absurd amount will be paid for by private insurance and secondary Medi-Cal. We will not be bankrupted by that absurd amount of money, the services rendered arbitrarily priced by the faceless. As I type these words, the politicians of the Disunited States are debating the repeal of the Affordable Care Act which, if not exactly perfect, brought great peace of mind to our household at least in regard to finances. Healthcare should be affordable and accessible to all human beings in a civilized, wealthy nation. I believe it's a right. It's not, though. It's not even about healing, to tell you the truth. It's a business, another commodity for the rapacious capitalists to pick apart. I'm not sure the capitalists realize that the effect is deeply psychological. I'm sure they don't care.

I'm tired of this. It.

My son Henry got a tattoo yesterday. He's been bugging me about it for months. I told him that at 18 years, he's too young, that he might regret what he puts on his skin. In October he came to visit Sophie when she was in the hospital, hooked up to an EEG. He's the silent type. He peered at the video monitor and said, That's what I want for a tattoo.  We took a still photo of the screen, as angry as it looked. He didn't relent, and I finally caved. Yesterday, we drove to Flying Panther Tattoo in San Diego where I got my mermaid a year ago. Allison is a goddess mother/healer whom I met in the epilepsy/cannabis world. Her husband Rob is the artist, and he tattooed Sophie's brain waves onto her brother Henry's arm. #radicalspecialneedssiblinglove.

I am still reeling from it.

It.

THIS is it.

Favorite Passages in Books I've Read: Part 5,678,329

He was alone. He was unheeded, happy and near to the wild heart of life. He was alone and young and willful and wildhearted, alone amid a waste of wild air and brackish waters and the sea-harvest of shells and tangle and veiled grey sunlight and gayclad lightclad figures of children and girls and voices childish and girlish in the air.

A girl stood before him in midstream, alone and still, gazing out to sea. She seemed like one whom magic had changed into the likeness of a strange and beautiful seabird. Her long slender bare legs were delicate as a crane's and pure save where an emerald trail of seaweed had fashioned itself as a sign upon the flesh. Her thighs, fuller and soft-hued as ivory, were bared almost to the hips, where the white fringes of her drawers were like feathering of soft white down. Her slate-blue skirts were kilted boldly about her waist and dovetailed behind her. Her bosom was as a bird's, soft and slight, slight and soft as the breast of some dark-plumaged dove. But her long fair hair was girlish: and girlish, and touched with the wonder of mortal beauty, her face.

She was alone and still, gazing out to sea; and when she felt his presence and the worship of his eyes her eyes turned to him in quiet sufferance of his gaze, without shame or wantonness. Long, long she suffered his gaze, without shame or wantonness. Long, long she suffered his gaze and then quietly withdrew her eyes from his and bent them towards the stream, gently stirring the water with her foot hither and thither. The first faint noise of gently moving water broke the silence, low and faint and whispering, faint as the bells of sleep; hither and thither, hither and thither; and faint flame trembled on her cheek.

"Heavenly God!" cried Stephen's soul, in an outburst of profane joy.

James Joyce, A Portrait of the Artist as a Young Man

The Pursuit and Practice of Equanimity

Your daughter, no stranger to bouts of weirdness that she ultimately recovers from, is acting very weird. She is not having any more seizures, per se, than usual, but she is very weak and doesn't want to walk and you held her in your arms exactly like you would an infant today and fed her a sippee cup of juice, sip by sip. She has no fever. She has no cold. You have run through the possible things wrong, and these include viruses, brain tumors, autoimmune diseases, broken necks or backs, severe pain, and, of course, Just Plain Old Fucked Up Epilepsy Shit. You said a few prayers before remembering that you actually don't believe in prayer, other than as a form of meditation and you do believe in meditation because it has, quite literally, saved you from insanity during the other bouts of weirdness your daughter has had over the last two decades, unlike prayer which has always had a desperate quality to it when you do it and a treacly, insincere, I don't know what else to do for you except pray sort of quality when others do it for you (with some notable exceptions from some truly holy people you know). Since the last time your daughter had a significant bout of weirdness (October is the cruelest month, contrary to the poet's dictum), and you landed up taking her to the hospital where, basically, nothing happened or was learned by the Powers That Be* over the six days you were in the hospital with your daughter and then you were sent an Explanation of Benefits by the Supreme Powers That Be** that amounted to $140,000 To Find Out Absolutely Nothing But That Your Daughter Has A Hospital-Acquired Urinary Tract Infection And Is Indeed Suffering the Toxic Effects of Vimpat Confirming The Mother's Tiny Little Mother Mind,™ you make the decision when you're not praying/meditating that you will not bring your daughter back to the hospital. You want everyone reading this who is not a doctor to not look on this as medical advice, but everyone reading this who is not a doctor should know that your lack of sense of urgency co-exists with a supreme panic and is the result of more than twenty years of doing this shit and meditating. Hence, equanimity.

Even the title of this post is a nod to equanimity as you just can't, no matter how hard you try, pursue it.

* The Neurology Community

** The Health Insurance Industry and Medical Industrial Complex That Has Now, Apparently, Taken Full Control Of the Disunited States or Drumpfland.

The Enigma of Glass

CHRISTMAS SPARROW

by Billy Collins

The first thing I heard this morning
was a rapid flapping sound, soft, insistent—

wings against glass as it turned out
downstairs when I saw the small bird
rioting in the frame of a high window,
trying to hurl itself through
the enigma of glass into the spacious light.

Then a noise in the throat of the cat
who was hunkered on the rug
told me how the bird had gotten inside,
carried in the cold night
through the flap of a basement door,
and later released from the soft grip of teeth.

On a chair, I trapped its pulsations
in a shirt and got it to the door,
so weightless it seemed
to have vanished into the nest of cloth.

But outside, when I uncupped my hands,
it burst into its element,
dipping over the dormant garden
in a spasm of wingbeats
then disappeared over a row of tall hemlocks.

For the rest of the day,
I could feel its wild thrumming
against my palms as I wondered about
the hours it must have spent
pent in the shadows of that room,
hidden in the spiky branches
of our decorated tree, breathing there
among the metallic angels, ceramic apples, stars of yarn,
its eyes open, like mine as I lie in bed tonight
picturing this rare, lucky sparrow
tucked into a holly bush now,
a light snow tumbling through the windless dark.

Merry Christmas Eve! 

And thank you, Leslie, for this poem!

Ghost Songs

"Tracy, wake up!" I whisper across the space between our beds.

I am ten and she is eight.

It's the middle of the night and I've had a bad dream. I have to go to the bathroom but I'm afraid to go alone.

She sits up without protest and gets out of bed, then walks shoulder to shoulder with me in the dark hall, holding my hand. In the bathroom I switch on the light, and covering her eyes with her hands, she sits on the edge of the tub and waits for me.

 from Regina McBride's memoir Ghost Songs

The above passage comes at the end of the memoir, and like much of the rest of the memoir, it moved me to tears with its simplicity and sweetness and fierce love.

More than twenty years ago, well before Sophie and My Next Life, I took a writing workshop at the New York City YWCA on the Upper West Side. The teacher was Regina McBride, and what I remember from the class was how inspiring she was -- how we were each encouraged to tap into our deepest selves to create story. It seems almost dreamlike now because the writing I did for Regina was actually the last writing I would do for more than ten years. I was pregnant with Sophie then, and three months after giving birth -- well -- you know the rest of the story.

When I randomly moved into an apartment building across the street from her family a couple of years later, we became friends and visited one another often. She was working on a novel then, and I remember being envious of her discipline, of how she appeared to make space for her art even under the duress of new motherhood.  When I left New York in 1997, we kept in touch. I read, avidly, her novels -- The Nature of Water and Air, The Marriage Bed, The Land of Women -- and her exquisite book of poetry, Yarrow Field. Her writing is luminous -- like she is as a person.

Regina's Ghost Songs: A Memoir was published this fall, and I've taken weeks and weeks to read it. I knew right away when I dipped into it that it would be something to savor, to take in over time in sips. Regina lost both parents to suicide within months of one another when she was seventeen years old. Raised as an Irish Catholic and deeply affected by the mystical elements of that faith, Regina weaves together childhood memories, sibling love, the immediate aftermath of the suicides and her trip to Ireland as a young adult to tell a story of sadness but also of great love. She's written a story in fragments, here, her pain not so much disguised as elusive, like the ghosts that she encounters in the aftermath of the shattering events. Her encounters with what you might call the miraculous are written without a trace of awkwardness or cliche. Her prose, both spare and magical, conveys a wisdom not just hard-won and brave but truly numinous.

Thank you, Regina, for the gifts of your writing, for being a touchstone for me of my other life.






Buy Ghost Songs at your independent bookstore, at Tin House or on Amazon.




And happy Christmas Eve Eve!

Peace in your mind, peace at home, breathe for peace, dance for peace, make love for peace

Christmas card pic, 2006

Sometimes I feel like screaming, What do they all want? I want to know what They all want -- the Republicans, Assad, the Trumps, the billionaires in his cabinet, all the billionaires, really, the terrorists, the oil people, the companies that manufacture weapons, the people who buy them for "protection," the oil tycoons, the climate deniers, the Christian evangelists, etc. etc.

What do they all want?

I'm aware that the question is rhetorical.

It's so easy to say it's all madness, but this time the easy is because it's true. It's madness.



I watched this video several times today, and I just can't get over it.  Lennon just asks the question in the simplest of ways, answers it and then gives us an alternative.

Please watch it. All of it. Even the messy and terrifying footage at the end.


WAR IS OVER! (If You Want It) from Yoko Ono on Vimeo.
If you had one wish for Christmastime, what would it be?


Peace on earth
Love
That implies 
No violence
No starving children
No violent minds
No violent households
No fear
No frustration


So this is Christmas, and what have you done?
Another year over, and a new one just begun.
And so this is Christmas
I hope you have fun
The near and the dear ones
They're old and they're young

The Power That Moves Through the World

Winter day in Los Angeles

I was sitting at the table with Sophie this morning, feeding her breakfast. She wasn't eating very well and by that I mean she'd take a bite but then forget how to chew for a moment or two. Saliva collects in the front of her mouth and falls out and down her bib, carrying the raspberry and the panettone. I imagine her motor planning to be scrambled. She will look at the food, coming toward her mouth, and I swear I can see the gears turning in very slow motion. I like to think that I look serene, but I know that my mouth is tight and my eyes are hard. Caregiving. Sophie had two big seizures in the early hours of the morning. She hadn't had any for about two weeks, so I guess it was time. I woke up at about three this morning to find her sitting on the floor beside her bed. After changing her and putting her back in the bed, I climbed in with her and closed my eyes. I guess it was sometime after 4:00 or so that she had the first seizure, in her sleep. Her stiffened arm hit my nose. When that one was finished I dozed off again for a couple of hours before she groaned and stiffened next to me, then began jerking. It only lasts for a couple of minutes, and I won't type but. I got up, made myself some coffee and put raspberries and panettone on a plate for Sophie.

Sophie is warm, nourished, housed and loved. She lacks for absolutely nothing.




But. 





If I look outward, I see the citizens of Syria coated in white dust, the children's' faces bloodied, their little mouths downturned. Some people say I can't watch those videos or look at those pictures. I feel compelled to do so. It's not because I am one-quarter Syrian. It's not because I am on the highway rubber-necking the accident on the side of the road. The necessity of being a witness. As one of my friends said, I will look at this and work to try to understand.


I will look at this and work to try to understand.












Sheep in the Winter Night

Inside the barn the sheep were standing, pushed close to one
another. Some were dozing, some had eyes wide open listening
in the dark. Some had no doubt heard of wolves. They looked
weary with all the burdens they had to carry, like being thought
of as stupid and cowardly, disliked by cowboys for the way they
eat grass about an inch into the dirt, the silly look they have
just after shearing, of being one of the symbols of the Christian
religion. In the darkness of the barn their woolly backs were
full of light gathered on summer pastures. Above them their
white breath was suspended, while far off in the pine woods,
night was deep in silence. The owl and rabbit were wondering,
along with the trees, if the air would soon fill with snowflakes,
but the power that moves through the world and makes our
hair stand on end was keeping the answer to itself.

Tom Hennen, via The Writer's Almanac

Reflection

I've tried to remember this particular Bruce Springsteen song that I heard about thirty years ago when I lived at the top of the stairs of a little brown shingled house in Chapel Hill. I've tried to remember it because of the way it made me feel that day when one of my room-mates or maybe even I put it on the stereo in our room and cranked up the volume. I think it started in that mournful way Bruce starts many of his songs and then picked up in that joyful way. I wasn't a big Bruce fan in college -- preferred rhythm and blues, Van Morrison and Bob Dylan. But that feeling when I heard that song, those lyrics, Bruce's voice -- that's really what I guess I'm trying to remember. How music slithers into the ear, the brain and breaks out of the body. Back in those days we couldn't look things up, so for years afterward when I thought about that song, god, what was it? I guess I was seeking the feeling I had when I heard it. I thought about the song and the feeling this morning in the dark as I lay in bed and listened to the rain falling finally, its thin patter on the metal awning over the back door. The word conjure. The word soothe. The memory of a smaller, smoother body now grown rounder and soft. Longing.

Tonglen

Because there's this country, richer beyond any yet bankrupt in all the ways that count --

Because there's Syria --

Because it's the anniversary of Sandy Hook --

Because our planet is being plundered --

Because my own heart is bitter --






Tonglen:

Breathing in the suffering of the world and others, breathing out love and compassion. Taking on the world's suffering seems ridiculous, except that it's not.

I am tempted to take care of my own, to tend my own garden, to go within as without seems dark. The hammering next door, the squirrels' chatter over a tangerine, the way the sun slanted through the window this morning.

The sense of the country going to pot. Our country, the wretched led by the morally bankrupt. The impossibility for me of not looking out, not being engaged and informed. The impossibility for me of only looking within. Illusion.

My reliance on meditation, specifically tonglen, forgotten and remembered. Relief.

Acknowledging misery -- the world's and my own -- is just that. Acknowledgement. There is peace in acknowledgement. Breathing out love and compassion.

Love is a verb.

We Interrupt this Nightmare Programming

How to stay WOKE and how to stay sane.

This year, I've officially read THE LEAST number of books ever in my lifetime. How's that for a poorly written sentence? If you look over to your right at my sidebar, you'll see my Bookworm 2016 list, and it's much sparer than those for the previous eight years that I've been listing them. I've also seen the least number of movies of my lifetime this year. I'm making no apologies here -- to you or to myself. I haven't been reading as much, and I haven't been going to the movies as much. I've been preoccupied by cataclysmic changes in my personal life and the world. I know I'm prone to hyperbole, but that is one true good sentence. These changes have been both profoundly awful (the election and the dystopian nightmare that has ensued) and, literally, life-altering in the best way (what causes the most distraction in life? she asks, coyly).

Now I'm going to tell you what my favorite book and my favorite movie of 2016 has been.

Oh, this book. Grief is the Thing with Feathers by Max Porter. It's small and it's beautiful and it's about grief and loss and death and children and love and a crow. You know how I feel about crows. I both despise and am seduced by them, regularly, in real life and on the page. Oh, this book. It's so wildly inventive that I am hard put to describe it. I aspire to write like this, to express myself with such economy and wit and truth. It's very short, but I read it slowly in order to savor every word and every bit of blank space. I love the yellow and gray of the cover, the way it feels in my hand. It's a poem and a novel and a visual feast. I read it a few times. You should, too.

Oh, this movie. Moonlight. I don't want to sully its beauty with my words, any words really. I saw it twice with someone I love, and we talked for hours and hours about it, both times. I'll see it again. It's about everything beautiful and sad you can think of, and it's about what it means to be alive and human. It's intensely specific and universal. There's a scene in it of a boy learning to swim in the ocean, his head resting in a man's hand, the water is all around them and the sky above and it's all around you and so is the sky and it's as if all of your life is cradled there, safe. And then there's the moon and the light and so many eyes and deep gazes both inward and out. I'm still trying to figure out how the director did what he did, how the actors portrayed these people so brilliantly and how a piece of art can quite literally make everything all right. I've seen it twice and will again. You should, too.










Reader, tell me your favorite book and movie of the year.




P.S. I have read the recently published books of dear friends, and I choose not to "review" them or pick as favorites. That's a given. Stay tuned, though, for my words about them both.

Tiny Little Mother Mind™ Part One

Tiny Little Mother Mind™, under wraps

I've got two things to say, and they're both reflections from my tiny little mother mind.™

I'm going to break them up into two posts. After reading this, stay tuned for the second one because it has to do with MEDICAL CANNABIS.

The first has to do with the wonderful commentator Van Jones, whom you might be very familiar with as his pre and post-election insights have been sustaining to many progressives. Today I read a good long interview with him in Rolling Stone. It's called Van Jones: Only a 'Love Army' Will Conquer Trump. Here's the thing. I love Van Jones and I love what he's saying. His words have particular relevance to me because I am guilty of spewing my disgust at the current political situation and certainly lumping all those who voted for Drumpf together. I am going to try, try, try to reach out and be more understanding of the varied reasons people voted for this man, however difficult that might be. I want very much to be a part of the 'love army.'

Where my tiny little mother mind™ gets miffed, though, is from this passage:

How do you do that? We're going to do national teach-ins starting very soon – once a week, every week, standing up for the most vulnerable people: Muslims, the DREAMers, Jewish people, women, trans people, black protestors. And once a week, give the whole country a chance to show a whole lotta love – both to demonstrate and deepen a solidarity with those groups, all under one hashtag. #LoveArmy is an opportunity to reassert at a values level.

What are we missing in that paragraph? Anyone? Who's missing? What did my tiny little mother mind™ catch that Van Jones did not, nor Rolling Stone?

THE MOST VULNERABLE PEOPLE in this country includes those with disabilities, particularly those with cognitive disabilities. They are routinely left out of the conversation, as we see in Van Jones' otherwise beautiful, inclusive words,  and while I know this isn't intentional, it's deeply symbolic.

What's coming round the bend with the Drumpf administration and his Band of Billionaires, as well as the usual folks like Eddie Munster et al, is striking fear into every single caregiver of a disabled person that I know and in disabled persons themselves. ALL the systems of care that we rely on, including health, health insurance, scientific research, education, social services, respite, etc. are at risk. These systems of care -- these issues -- help to assert and maintain the dignity and well-being of disabled persons. DISABILITY RIGHTS ARE CIVIL RIGHTS.

I'm not sure what to do about it but keep talking and talking and writing and writing. Will you help me? Will you share this? Will you speak to Van Jones and Rolling Stone and other media outlets that routinely neglect to include the rights of the disabled as worthy? Again, I do not think it's intentional but rather that the disabled have perhaps the quietest voices, if at all, in our country. They are not literally "worth" anything at all -- monetarily. Often they do not have a vote or a voice. Their caregivers are generally exhausted. They have few champions.

This tiny little mother mind™ is begging you to help.

#LoveArmy