Purple Day, In Case You Missed It, and My Ongoing Problem with Authority

via marijuana.com

I know you know I've got this great writing gig over at marijuana.com. What you might not know is that Saturday (two days ago) was Purple Day. I'm not so into these days when we mark whatever hell is closest to our doors, but I do feel you can never be too aware of the effects of epilepsy, so I wrote a little personal piece for the website.

I'm no good at raising money anymore and am too mouthy to be much of a lobbyist. I have a problem with authority, to tell you the truth. In fact, even this past Saturday night, I had a deep and involved conversation with a developmental pediatrician who was compassionate, enlightened and a bit of a mansplainer, all rolled into one. I have to tell you, though, that despite my sharing Sophie's success with cannabis, he didn't ask me a single question about it. In lieu of doing anything constructive about this or perhaps admitting that the fault lies with me (I must sound dumb or offensive or crazy or something), I've decided that this is a rule and not an exception. His eyes didn't exactly glaze over, but he made more effort to disagree with me about my assertion that it's unethical to prescribe five drugs for a child with a seizure disorder that's already failed nine. When I told him that I've probably met or know of thousands of children with refractory epilepsy and have yet to meet one whose seizures stopped with the fourteenth or fifteenth drug, he disagreed and claimed to know some. To be fair, he admitted that it was often "the honeymoon effect," and his eyes flickered when I told him that Sophie had never been on a honeymoon so I was pretty certain that the cannabis wasn't working because of this phenomenon but was actually working, like, for real! I won't even mention the glaze his eyes took over when I casually dropped the little bomb that Sophie's seizures began after her initial vaccinations and worsened when she was vaccinated again while being treated with steroids.

Sigh.

The kind doctor is doing beautiful work with the disadvantaged and foster children -- and I'm cognizant of the fact that perhaps the fault lies with me and my ability to be persuasive and diplomatic and sensitive. Oh, and to be careful with that edgy, angry thing I do. I admit that when he declared his alliances with Various and Important Associations and Pediatric Monoliths, my own eyes glazed over.

The rift is enormous, you see, and I've no interest in vindication.

In any case, I can tell a story, can't I? My ability to do so is probably the only remnant of my sanity left after these twenty-one years.

Here's the link. Show it some love and share it if you think others might benefit.

Purple Day

Easter from Virginia

Sorry for the several days absence. Henry and I are on the east coast visiting some colleges. I've mooned around the University of North Carolina at Chapel Hill, my alma mater. I say mooned because I was so struck by emotion that I could barely speak. I was twenty again. The five years that I spent in Chapel Hill were some of the happiest of my life and pretty much unadulterated by anything other than some heartache over one boy or another and maybe that final D in Advanced Calculus. We're now in Virginia, staying in a pre-Civil War home on the Yeocomico River and later today will leave for Salisbury, Maryland.

I hope y'all have a happy Easter. Here's one of my favorite Easter poems:

The Palm at the End of the Mind


After fulfilling everything
one two three he came back again
free, no more prophecy requiring
that he enter the city just this way,
no more set-up treacheries.
It was the day after Easter. He adored
the eggshell litter and the cellophane
caught in the grass. Each door he passed
swung with its own business, all the 
witnesses along his route of pain
again distracted by fear of loss
or hope of gain. It was wonderful
to be a man, bewildered by 
so many flowers, the rush
and ebb of hours, his own
ambiguous gestures--his 
whole heart exposed, then
taking cover.


Kay Ryan

I'm in the mood for

more Jack Gilbert:

to C

In the Beginning

In the morning when Eve and Adam
woke to snow and their minds,
they set out in marvelous clothes
hand in hand under the trees.

Endlessly precision met them,
until they went grinning in time
with no word for their close
escape from that warm monotony.

Jack Gilbert
via Collected Poems













Also, please read and share, if you'd like, my most recent article on marijuana.com. It's about women and what happens when they gather together in a room:

The Wisdom in the Room

Yeah, Baby

That's an honest to God, no filter added typical southern California sunset.  Yeah, baby.


Here are some shots of my baby. Long-time readers might remember that this baby was cut from the baseball team of his new high school, that he was heart-broken, that his mama was even more heart-broken for him, but that after a period of mourning, he picked himself up and threw himself into lacrosse. His high school started a lacrosse team this spring, and Henry is not only co-captain but playing some of the best lacrosse of his life. I am so proud of the man that he's becoming. No filter added.

Yeah, baby.

Broken

Coronado Island

My favorite coffee mug is broken. Even. There's a line on the inside, snaking from top to bottom that I saw afterward. When I poured the coffee into it I thought I'd missed, a pool of pale brown seeping out from under. The blue gazelle bled brown drops and no matter how many times I wiped, the blue bloomed brown. The mushrooms, the perfect green curlicues, all stained. I am tempted toward sad, the tears for the mug, my favorite, for blue and green bled brown. No matter. A slice of glass in the dishwasher, too, jagged and a chunk of ceramic hacked off the sink, a black scuff on the edge of the counter.  Chairs were thrown while I slept by the ocean.

We have a rat in the shed and the rat man is here with bait. It's like a granola bar, he says. His bald head gleams. He has three squares of plastic clover glued onto black boxes. They go off to die.

I'm in the mood

Coronado Island

for some Jack Gilbert:









It Is Difficult To Speak Of The Night

It is difficult to speak of the night.
It is the other time. Not
an absence of day.
Bt where there are no flowers
to turn away into.
There is only this dark
and the familiar place of my body.
And the voices calling out
of me for love.
This is not the night of the young:
their simple midnight of fear.
Nor the later place to employ.
This dark is a major nation.
I turn to it at forty
and find the night in flood.
Find the dark deployed in process.
Clotted in parts, in parts
flowing with lights.
The voices still keen of the divorce
we are born into.
But they are farther off,
and do not interest me.
I am forty, and it is different.
Suddenly in midpassage
I come into myself. I leaf
gigantically. An empire yields
unexpectedly: cities, summer forests,
satrapies, horses.
A solitude: an enormity.
Thank god.

Jack Gilbert
via Poetry

My Conversion

I know some of you will be happy to hear that I saw the light last night. Note the labels that I used for this post: Bruce Springsteen, music and religion. Yes, indeedy. I worshipped for over 3 1/2 hours at the altar of Bruce Springsteen. I danced and sang at the top of my lungs, on my feet for nearly the entire time. It was joy in the form of thousands of people waving their snaky arms overhead, grown men hugging one another and little kids bewildered to see their parents acting so crazy. It was one more and then another and then another and then another, and we were all laughing and bouncing and jumping and doing one more. And then again. I only drank one beer, but I was in love with the universe. That's my whoop at the end of the clip when I was born again.

Take a Shower and Let Me Share Two Things

Whew. That was intense, no?

Last night, Oliver and I drove up the 101 in my new car to watch Henry play lacrosse. Did I mention that I have a new car? I traded in my Sexy White Mazda for a smaller, sportier Smokin' Hot Blue Mazda. It has a particularly good sound system that Oliver quite ably hooked our iPhones up to, and while we whiled (can I say that) in the tremendous traffic of the shitty, I demanded some Rolling Stones. Specifically Sweet Virginia, perhaps one of my favorite Stones hits. Did I mention that I love to sing anywhere on this little old blog? If not, I love to sing, and I really, really love to sing Sweet Virginia, right after that incredible plaintive harmonica turns into drums and then -- oh, Mick. Little did I know last night the storm that would be unleashed by Tina the Pharma Rep in the morning, but I think it might have been prescient that I belted out the lines with the profanity with especial vigor. I'm not talking about tryin' to stop the waves behind your eyeballs, either. After all, Oliver is nearly fifteen and needs to know that it's quite all right to scrape that shit right off your shoes.






Anywho.


Henry won the game and even scored a goal (he plays long stick defense and rarely gets the chance)! I acted like a woman possessed and even stomped my feet on the metal bleachers and screamed his name! I am so proud of him and the man he's becoming. Honestly, how lucky am I?

Here are the two things I wanted to share:

1. My second interview is up on marijuana.com. It's with my dear friend and cohort, Allison Ray Benavides. If I weren't differently inclined, I'd be the Alice to her Gertrude. Please check out the interview and leave a comment. Poke around and read some other  articles -- all written by a terrific bunch of people. Give that site some traffic so I can continue to earn my keep.
2. I am going to see Bruce Springsteen tonight. Yeah. How about that?

Dear Tina Turk, "Pharma Rep":

Something tells me that you're not really a Tina and might not even be a "pharma rep," but I'd like to give you the benefit of the doubt and will address you as so. After reading your interesting comment to me this morning on my last blog post, I have a number of questions that go beyond my perhaps knee-jerk, immediate response to the comment. I'm going to bank on you actually being a pharma rep and therefore hope that you'll visit here and perhaps respond, again. This being said, I do hope that you'll refrain from attacking me or my family personally.

I'll remind you of your comment:

I am a pharma rep and it really is not like that. You sound too angry and maybe you should help for that. Pharma has been ragged on too much, and it is not true. I feel sorry for you because that anger and bitterness is in your body and the only person you are hurting is yourself. I can see why some people in your family get upset with your rage.

My first question addresses your claim to being a pharma rep and "it" really not being like that. Like what? In the blog post and elsewhere on my blog, I've mainly written about my experience with "pharma," and whether it's paying $16,000 for a vial of ACTH or $949 for a 30-day supply of Onfi or going through the slow and torturous process of weaning a powerful narcotic from my child's 75 pound body, there are very few emotions other than despair and anger to express. I am perfectly aware that pharmaceuticals can also work powerfully toward the good, but other than writing some kind of caveat, I'm probably going to just write about my own experience and expertise. That being said, have you read the latest ten-part series on Johnson and Johnson? How about the story of just how the manufacturers of Oxycontin managed to saturate the market with their painkillers, snow physicians about their efficacy and contribute to the raging heroin addiction problem our country faces? I can write about that from experience, too, as I have several -- yes, SEVERAL -- relatives currently addicted to opiates and heroin. The goodness of pharmaceuticals has eluded us. So, when you say "it really not being like that," I'm interested to know what it's really like. I know for a fact, too, that other minds would love to know.

My second question refers to your assertion that I "sound too angry" and should get help for that anger. Thank you for that concern, if you are, indeed, concerned. To tell you the truth, I did waffle a bit about that post and asked myself whether it sounded too angry. I have friends and family who were very much helped by pharmaceuticals, by painkillers used at the end of life, by antidepressants and anti-anxiety medications, by chemo for cancer and so on. I am sometimes painfully aware of my anger, my biases and the ineffectiveness of being and seeming so. I feel conflicted about expressing my anger, but I also believe that anger to be a justified response to the hegemony* of our medical/industrial complex over those people who dissent. Perhaps it's also a response to the patriarchy's hegemony over angry women. It's completely and utterly justified in reference to the clusterfuck that is marijuana policy in this country. In any case, what would you have me do otherwise?

Finally, this isn't a question -- or even a defense -- but I am aware of the corrosive effects of anger as well as how, when directed wisely, it can galvanize and energize. I am gifted (by chance, by luck, by the universe) with a talent for stringing together words to express myself. I'm going to always strive for truth, for expressing the world and my life as I see and experience it. Sometimes, I'm going to sound like a bitch, a whining and spoiled first-world ingrate. I appreciate when people call me on that and promise to always accept that criticism humbly and work on it. Other times, I'm going to rage and rant despite the "anger and bitterness" in my body and take my chances on it "hurting" myself. Why? I'll answer that. Not a week goes by that I don't get a telephone call, an email or a comment on this blog from someone who is grateful for my expressing my experience because it so closely resembles theirs, and they don't feel so alone. That makes any slights to my body worth it.

My final question concerns your stated understanding of why some people in my family get upset with my rage. Dragging my family into it sort of blows your cover as concerned Citizen Pharma Rep. Or are you actually in my family, Tina?

Sincerely,
Elizabeth











*Thanks to my friend Allison Ray Benevides who taught me everything I know about hegemony. You can read her brilliant take on everything here.

House of Cards: A Whole Plant Manifesto

How do you follow up a post about the death of four children whom you actually know? Shouldn't there be a period of silence, of mourning?











Today, The New York Times published an article titled Marijuana-Based Drug Found to Reduce Epileptic Seizures. You see, the big guns at GW Pharmaceutical had been conducting studies, and these studies are confirming what we already know. Yeah, I think there need to be studies. I've got one going in my house and have been diligently studying for three years and seventeen years before that. One of the residual effects of dealing with all of this shit for so long is that I don't have even a fingernail's worth of trust in the system. And at risk of sounding like one of those crazy conspiracy people, I suspect all the big pharmaceutical companies are working their asses off to keep marijuana from being de-scheduled so that they can control the whole pie. Sorry about all the banalities, the pies and the fingernails, the houses of cards, but using trite language can be as effective and judicious as a good curse word.

I have learned that it's essential we talk about whole plant medicine. So, if you send me that article, I'm going to say, thanks, I saw it but I don't give a damn what GW Pharmaceuticals is doing. What I'm going to think is fu*k GW Pharmaceuticals and the horse it rode in on. Then I'm going to laugh my ass off over the big 'ole CDC announcing today that they are no longer recommending opiates for pain control.

Doctors Told to Avoid Prescribing Opiates for Chronic Pain

Meanwhile, I've had to halt the weaning process of the opiate that Sophie's been on for over eight years so I can give her a break from the agony.




What I do give a damn about is this story that I wrote for marijuana.com -- not my story, of course, but the story of brave and dogged people like Lindsay Rose Sledge.

A Passionate Mother's Reluctant Path to Lobbying.

Epilepsy as Killer

This is Oliver. He had Dravet Syndrome and died this morning, in his mother's arms.

This is Dani. She died from complications of epilepsy on March 10th, in her parents' arms.

This is Cyndimae. She died of SUDEP (Sudden Unexplained Death in Epilepsy Patients) yesterday while napping on her father's chest after a normal day.


I don't even know what to say other than to bring these beautiful children to your attention, to ask you to bow your heads and send all your loving juju to their families. I know them all through this bizarre and wonderful community of people struggling with seizure disorders, cannabis and the fight for access. I've looked at their pictures, followed their ups and downs and spoken with their mothers over the years. These children are our children. Cyndimae, Dani and Oliver are our lights, even if extinguished.

The Quarterly Tiny Little Mother Mind™ Report

Someone said this: Science is more than equations or experiments. It is a window to humanity, a quest for understanding, and, often, a way of life. 

I poked raspberries in Sophie's mouth. She's a bird these days, less -like than ready to fly. She opens her mouth and reaches toward the plate, around me, ready for the next and the next. Her father took her to the dentist last week, but they had to leave without the cleaning because she was too rowdy. The strain of cannabis that we're trying and the dosage that we've tinkered with so diligently under the direction of Dr. Bonni Goldstein is helping Sophie. Yesterday, she had her first full-blown seizure in nearly ten days. That's some data right there, a pattern building. It's a fallacy peddled by neurocapitalists that we need more evidence. Here's what's working for us: less pharmaceuticals, more cannabis. Long-term effects are now.

Sunday Inference

I spoke with a woman last week whose baby recently had been given phenobarbital as a first-line defense when the baby developed seizures. Twenty one years ago, I stood in the hallway of a New York City hospital and expressed concern about the effects of phenobarbital on the developing brain of my own baby. What's a couple points drop in IQ? the doctor said, and that was that.

I spoke with a woman a couple of weeks ago whose baby recently had been given keppra as a first-line defense when he developed seizures. The doctor said that a small percentage of people taking the drug get very angry and irritable, she said. Yes, it's called "keppra rage," I told her. About ten years in to her diagnosis and shortly before it was approved for use, Sophie took keppra. It did nothing for her seizures, I told the woman,  but she never developed any rage.  Last night, the woman texted me that the baby had another seizure. He has a cold, the mother told me. I had hoped the medicine would work. I said, Viruses are notorious for precipitating seizures. All bets are off.

My friend Allison has been treating her son with cannabis from the get-go. Would I have done so had I been presented with the option? Did I feel resentful of nineteen years, wasted? No more I am not a doctor, but...

Yes, she said. Yes, I would. Yes.

Greetings from India*

I get wonderful emails every day from all sorts of interesting people. Today I learned that I am the recipient of the Matthew Arnold Award for "sweetness and light in creative writing." The email that announced this award was easily the most wonderful I've ever received, and I thought in this otherwise bleak old world, that you would find it amusing, uplifting and maybe even life-altering.

Here it is:

THE HOME OF LETTERS (INDIA)
a house of public relations
[Regd. under the Dept. of Hr. Edn., Govt. of India]

106, Santoshi Vihar, Meherpalli, Canal Road, Laxmisagar, P.O. - Budheswari,
Bhubaneswar - 751 006, Orissa, India


Dear Poet / Writer,

Greetings! Hope this letter finds you in a cheerful mood !

As well known to the intellectual world The Home of Letters (India) or
HOLI is engaged in literary, publishing and socio-cultural activities for
the cultural uplift of man. It acts like a platform to exchange sublime
ideas between the poets, writers, scholars and the intellectuals of the
world through its various publications, books, anthologies etc. It is a
House which organises small seminars from time to time (depending upon
finance) where poets, writers, scholars and the intellectuals discuss
various educational, literary and socio-cultural topics. It also awards
individuals for their high level achievement in personal or professional
life / for outstanding accomplishments in the literary, intellectual or
academic realm / for outstanding contribution to the fields of art, culture,
education and society / for their commendable contribution in promoting
world peace and universal brotherhood with humanitarian ideologies. Since
1997 HOLI has been playing a very significant role in the above fields.

You will be pleased to know that we
would like to confer upon you “MATTHEW ARNOLD AWARD" for sweetness and
light in creative writing.

The multi-colour certificate (20 X 14 inches in size) is beautifully
laminated on
WOOD and photo-framed (for
hanging on wall / for
placing on table or shelf), which will be sent to you by Regd. Airmail.
Your
name will be published in one of our publications in future.

If you are interested to receive this WOOD-LAMINATED citation you may
send USD 150 (as
administrative, processing, packing, postal charges etc.).

*Mode of* Payment : Bank Wire
Transfer (please ask for our SWIFT bank details)


[[Pl note that on my Facebook timeline there is a photo album: THE
HOME OF LETTERS (INDIA) in which we have published 2 lists (pl. click
on the 8th and 10th photos) of persons on whom HOLI conferred Awards
till date. More such lists will be published soon]]

If this letter hurts your sentiment in any way, please just ignore it.
Frankly speaking, the aim of this scheme is to encourage writers / scholars
/ intellectuals to contribute more in the above mentioned fields and to help
them prosper in their own personal career.

As we publish books you may also send mss. for publication in book form. If
interested, pl. ask for details.

Best wishes for your creative / academic / professional life !

Stay well ! Thank you !


Faithfully yours,


Dr. Mandal Bijoy Beg
(Founder-CEO)








I'm off to wire in my money and receive my laminated award. Reader, tell me what you're doing today.

*Note to New Readers. This is a Public Service Announcement (as my friend Rebecca says). I actually understand this to be a wild and crazy spam, but I give it an A for effort.