Sunday, May 31, 2015
I woke up yesterday morning to a long, kind email from a stranger who claimed to have read my writing on Krista Tippett's On Being website. I didn't know what she was talking about. Then I got a notice that someone had tweeted something I said, or should I say I got a tweet? I have a twitter account (is that how you say it?), but I have used it maybe four times. I have no idea what I'm doing reading or writing tweets. Or twittering. And then someone liked -- or is it favorited? -- that tweet. Or is it twitter? Oh, twat! In any case, I eventually made my way to the On Being site and saw that a post I wrote years ago was their featured blog post for the day and that they'd also posted many photos from my blog and the Extreme Parenting Video Project. My name was right on there, as was my picture and a little bio. A link to the ebook was there, too.
I'll make a long story short. I had no idea why all of this was published. I never received any word from the site that they were publishing my work, and here's the clincher: I have no memory of submitting anything to them. I wrote the editor and explained that while I was thrilled and honored to be featured, it felt weird to have not been contacted beforehand.
The internets are strange and wild, indeed.
The editor got back to me with an apology for their oversight in not contacting me. Evidently, I had submitted the piece, but I'm not sure when. Have I gone mad? Again, I have no recollection of doing so, and the piece was written in 2012, well before we embarked on the cannabis odyssey.
The On Being website and recorded interviews are some of my favorite things generated online, and I have often felt that Krista Tippet might have the best job in the universe. So, wow. I'm honored and grateful to be included on the site.
You can read it here.
Feel free to tweet and twat and twank about it, too.
Saturday, May 30, 2015
The ritual of placing the bottle of cannabis in a cup of warm water, Frida's eyes, the coconut oil relinquishing into the drawing up, just so, that tiny bit, 1.2 milliliters per syringe, not a murder (crows), a grist (bees), nor a rookery (albatross) or a bloat (rhinoceroses) but a group of them, nestled in a blue fertile cup, the Lone Ranger keeping guard.
I am gobsmacked by this liquid gold.
Friday, May 29, 2015
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.
Thursday, May 28, 2015
It's a spectacularly beautiful late afternoon in southern California. The wind chimes are dinging, the Mariachi McMansion music has stopped, the breeze is rustling through the palms and I'm lying on my bed with the sun slanting through. I'm reading Rachel Cusk's novel Outline. It's a novel for a day like this, a time like this, a person like me. It was Henry's last day of his sophomore year in high school. He took his last exam, appeared at home for a couple of hours and then left for his girlfriend's house. Perhaps I'm histrionic. His leaving -- for his girlfriend's house -- has made me think of all the leaving to come. I'm not sure how it happens, the cliche of time passing. The first day of summer marks an endless stretch of time when you're young. Henry lets the front porch gate slam shut when he leaves, and the wind chimes pause and rearrange their drift, a current weaves down the hallway and collides with the air from the open back door and slams the bedroom door shut, the bang and my breath and my heart's beat and then just quiet.
Wednesday, May 27, 2015
|Sophie understands it and thinks it sucks.|
The Good Neurologist is happy to see Sophie bright and attentive and walking on her own into her office instead of slumped in her wheelchair. The Good Neurologist acknowledges how wonderful her patient looks.
The Good Neurologist apologizes for Sophie's traumatic EEG from a couple of months ago and realizes that it wasn't a great example of Sophie's improved clinical presentation. She is happy to report, though, that there is no ESES on the EEG. ESES is short for electrical status epilepticus in slow-wave sleep, and Sophie has had two bouts of it in her life, both devastating and too traumatic to recount here. The Good Neurologist is also understanding of the mother's aversion to learning what was on that EEG and decides that we don't need to do any more for a really long time.
The Good Neurologist takes notes while the mother talks, and she asks questions about how Sophie's CBD is dosed. She is appropriately excited by the mother's report of relative seizure freedom since going back on the original California Charlotte's Web.
The Good Neurologist is genuinely interested in hearing the mother discuss what types of cannabis Sophie has tried, how well they've worked or not. She takes notes.
The Good Neurologist listens avidly and carefully as the mother tells her about the disastrous epilepsy conference where the mother was insulted by The Good Neurologist's colleagues. She doesn't flinch when the mother names the offending parties and says, I was enraged by it for a while, but my overall feeling now is that I don't give a damn what the neurology world thinks.
The Good Neurologist is able to do a sort of mind meld with the mother so that the mother understands that The Good Neurologist is very excited about this new treatment for Sophie, even though The Good Neurologist is unable to jump up and down and scream into the hallways because some of her colleagues are assholes and might not approve.
The Good Neurologist has big brown eyes that widen when the mother reports how much of the hated benzodiazepine has been weaned from Sophie. She is very, very impressed. She acknowledges this achievement. She provides encouragement to keep going.
The Good Neurologist speaks to Sophie and is warm and engaging. The mother and Sophie leave the office of the Good Neurologist and drive through afternoon traffic without crying or seizing, respectively.
It's obviously human hubris to think we can destroy the planet, can destroy life. It's just another exaggeration of ourselves.
A kind of bottom line is that all human activity is as trivial as anything else. We can humbly acknowledge that and excuse ourselves from exaggerating our importance, even as a threat, and also recognize the scale and the beauty of things. And then go to work. Don't imagine that we're doing ecological politics to save the world. We're doing ecological politics to save ourselves, to save our souls. It's a personal exercise in character and in manners. It's a matter of etiquette. It's a matter of living right. It's not that the planet requires us to be good to it. It's that we must do it because it's an aesthetic and ethical choice.
Those issues are all real, but they're not total. And the power of the universe far surpasses any damage we can do to it.
Gary Snyder, Tricycle Magazine interview, adapted from Nobody Home: Writing, Buddhism and Living in Places, by Julia Martin and Gary Snyder
If you're like me, you feel a rising panic about the state of the ecological world. You feel inadequate to the task and perhaps even complicit. You feel like your thoughts are free-floating and ineffectual. Your attempts to reduce your carbon footprint, to tread lightly, to support environmental causes seem paltry in the face of population explosions, oil-slicked animals along the coast, a contaminated food supply, and an over-medicated population whose urine and feces are laced with chemicals that are then flushed into the water and recycled, squirted from our breasts into babies' mouths and onward. That was a hellish sentence, no?
I read Gary Snyder's provocative words, excerpted above, and felt, if not comforted, then galvanized. I'd love to hear what you think of them -- even if you have no Buddhist leanings.
Here's a Gary Snyder poem -- one of my favorites:
Lay down these words
Before your mind like rocks.
placed solid, by hands
In choice of place, set
Before the body of the mind
in space and time:
Solidityof bark, leaf, or wall
riprap of things.
Cobble of milky way.
These poems, people,
lost ponies with
Dragging saddles -
and rocky sure-foot trails.
The worlds like and endless
Game of Go.
ants and pebbles
In the thin loam, each rock a word
a creek-washed stone
with torment of fire and weight
Crystal and sediment linked hot
all change, in thoughts,
As well as things.
Tuesday, May 26, 2015
|Portrait of a neurologist using electro-stimulation|
I've got two things to say.
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.
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.
Monday, May 25, 2015
I woke up this morning with my, of late, customary Dread That Has No Reason other than The Usual. I had planned on taking Oliver out to the Angeles National Forest for one of those Jim Robertson Aboriginal Skills classes* that I told you about more than a year ago when I started homeschooling. This one was Primitive Pottery. Reader, I did not want to go this morning and spent a good half hour in bed pondering whether and why. I finally decided that since I'd paid and gotten a babysitter for Sophie, I would do it.
Well, thank the good lord I did it.
I bet ya'll didn't know that you can drive for about 51 minutes outside of Los Angeles and see this.
Jim made fire the primitive way, and then we passed around a smudge stick to introduce ourselves.
Then we set about making pottery, right down to the clay. We even made what's called the "temper."
Here are a few of the pots made in previous classes:
Oliver and I warmed up -- very chilly in the woods -- while eating our lunch:
Here are our pots:
Then we made paint. We literally made paint:
Ya'll I am not an artist, and while my intention was stronger than the finished project, my little one came out pretty damn good. I even made a lid for it. We learned all sorts of things about clay and paint and firing and all that jazz, but I won't tell you here (mainly because I didn't know what the hell I was doing).
What I can tell you is that I highly recommend a full day (ten hours for us!) in the woods. I feel utterly relaxed tonight, and I haven't felt that way in a long time. I'm not even irritated at myself for going so long without this kind of natural respite.
Jim made us a pot of soup right on the fire. It had some kind of organic vegetable bouillon, greens and herbs from the woods and water. Someone asked Jim whether he meditated or prayed. He said,
No, I don't pray. My life is a constant prayer.
*Other Jim Robertson Aboriginal Skills posts:
In His Element: Dispatch from the School of Revolution
Aboriginal Skills Part II
The Burn Bowl
Sunday, May 24, 2015
I had such a good time doing this podcast for my friend Lindsay Eller Kavet of Expressing Motherhood. It's always a little disconcerting to hear your voice -- do I really sound like that? -- but I'm definitely a talker, and I just love Lindsay and really admire how she supports creative women and mothers. Check out her site and consider submitting and doing one of her shows. Upcoming ones are in San Francisco and South Dakota.
Thanks, Lindsay, for this opportunity!
Saturday, May 23, 2015
We missed you!
Here's the menu, a kooky and entirely delicious collection of Shopsin's recipes from his memoir cookbook Eat Me and the above featured Mini Baked Alaskas:
Bing Cherry Vodka Mojitos
Creamy Tomato Soup with Garlic Toasts
Pita Feta Salad with Tabbouleh
Andy's Way Sandwiches
Chicken Pecan Enchiladas
Chicken Pot Pie
Mini Baked Alaskas
The most wonderful, erudite people came last night -- some I'd never met and now call friend. We laughed and discussed the book and ate ourselves silly.
There's still time to sign up for next month's meeting on June 22nd. Email me if you think you can make it. And have a happy Saturday --
Friday, May 22, 2015
Tonight is the fifth month of my Books & Bakes Literary and Food Salon. The May selection was the kooky memoir/cookbook Eat Me, The Food and Philosophy of Kenny Shopsin. I shook things up this month by asking people to bring a dish from the book in lieu of paying full price. It looks to be as kooky a line-up of food as the book was to read! I'm filling in the gaps with a main dish that isn't in the book and a dessert (Shopsin only serves milkshakes, as far as I can tell). Oliver took the photo above. I made Honeycomb Vanilla Ice-Cream and Brown Butter Poundcake. It'll be slathered with meringue and torched to make Mini Baked Alaskas. I got the recipes from Food 52, an amazing site to check out when you have a moment.
If you're in the southern California area, please think about attending one of my salons. Share with your friends, if you have a hankering to help my little cottage business grow. You might consider having me come to your home with your friends for a get-together, a change from your usual book club, a gift for someone or an office party. For more information on the June 22nd salon, see my other website. We're reading Toni Morrison's The Bluest Eye.
Wish you were here!
Thursday, May 21, 2015
|The stacks in Wilson Library, University of North Carolina|
at Chapel Hill
When I feel afraid and overcome, I turn to books and stories.
I've written about them before -- the musty floors of old Wilson library at UNC in Chapel Hill where I spent hundreds of hours studying, wandering around, my fingers trailing the dusty spines of books forgotten. On the top floors you could find an empty carrel with a wooden desk scratched with the initials of long ago lovers, a peace sign, a curse word. I kissed my boyfriend there, sitting on his lap, our books and notebooks and pens scattered. Fifteen minutes before 11:00 at night, an ancient man, an Ichabod Crane with a head roamed the stacks, ringing a giant cowbell to warn us of closing. You rode creaky elevators down and then waited in line with other library rats (the less studious studied at the more open library or in the magnificent reading room where you could see and be seen) to have your backpack riffled through, the security measures of the last millenium. Then out onto the broad steps of the library, the campus spread out in front of you, the air velvet for the library behind you, the gracious oaks and lawns stretching forward into some impossibly benign future.
I can go there whenever I want -- to the carrels, to books, to metal shelves and scratched love notes, to kisses and love, leaves on trees and lazy days when my mind was busy with Auden and Li Po, with French verb conjugations and Nicaraguan history, figuring out whether he loved me or not and so on. That library, those stacks, that time in my head sustains me, sometimes, when I feel suffocated by the minutia of the life I live now. It is, in fact, books and my memory of them, how I felt as I read, how I lost myself in them, that sustains me in constancy. It is, in fact, books and the present, how I feel as I read, how I lose myself in them, that sustains me in constancy.
What are you reading?
Wednesday, May 20, 2015
My friend Moye and I went out to dinner last night to celebrate her birthday and listen to the poet Jane Hirshfield at the Grand Central Library. We ate outdoors at a fancy restaurant that sits in the courtyard of the library. The night was beautiful and breezy. We ate French onion soup and kale salad and some kind of lamb dish with papardelle that I couldn't finish because I was full. We laughed, as always, and shared our lives. Moye is easily the kindest, most gentle woman I know who is also staggeringly talented and funny. Honestly, she might be perfect. Later, we sat next to each other in the small auditorium, our shoulders touching in the small seats, and I wondered at the beauty of the nearly forty years that have passed since we first met and the many times we sat together in English classes throughout middle and high school, listening to poems and teachers. We've gray-streaked hair and crows' feet now, yet we share a raucous sense of humor and love for what's beautiful.
I don't know Jane Hirshfield's poetry well, but I have read a few of her spare and beautiful poems over the years and recently savored an interview with her in Tricyle Magazine. In addition to being a poet, Hirshfield is also an ordained practitioner of Soto Zen Buddhism. Here's an excerpt from the Tricycle interview:
At any moment in a life, a person has this choice: presented with suffering, do we try to escape or to enter it further? Art’s gate is deciding to move toward entrance and not absence, and that choice has been a fundamental and shaping force in my life. We can’t sleepwalk through suffering: by its own definition, suffering is insufferable, unbearable, and so must be worked with. Since childhood, the way I’ve worked with it is by turning toward the gate of entrance: by writing poems.
Here's a poem:
As a Hammer Speaks to a Nail
When all else fails,
fail with conviction,
as a hammer speaks to a nail,
or a lamp left on in daylight.
If two does not follow,
say three, if that fails, say life,
lacking iron, try shadow.
If shadow too fails,
if your voice falls and falls and keeps falling,
meets only air and silence,
say one again,
but say it with greater conviction,
as a nail speaks to a picture,
as a hammer left on in daylight.
Here's what she wrote in my copy of her new book, The Beauty:
Tuesday, May 19, 2015
even the recollection of the suffocation
All I can think of is how she struggles! said Oliver after breaking down yesterday in the car on the way home. He had just gotten his first shot at the doctor's office. (not a dream note)
the O of Sophie's mouth
cold, hospital hallways
elevator doors sliding open
a cup of urine on the window sill, looking out to a darkened air shaft
(not a dream note)
the elevator door, the yawn of it
stretching open into the years
Monday, May 18, 2015
|photo by Lynn Johnson for National Geographic Magazine|
My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.
Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.
In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.
I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:
Sophie’s Drug History 1995-2015
Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)
IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)
Ketogenic Diet (two six-month trials, 1995 and 1999)
What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them.
I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.
Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.
Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.
*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit.
|Waiting on Sophie's cannabis|
May 17, 2015
What is the meaning of life? That was all – a simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. This, that, and the other.
Virginia Woolf, To the Lighthouse
Sunday, May 17, 2015
I took Oliver and Sophie down to a boat festival in Redondo Beach late this morning. We left Henry at home, sleeping as is his wont. After walking around all the booths, looking at the beautiful boats, and eating some fried seafood at one of the clubs that had opened its doors to festival-goers, we drove back home and listened to the Moth on the radio. First we heard Bliss Broyard's very first Moth performance when she told the story of discovering her father was black when she was 23 years old. Oliver thought it was weird, but he listened and didn't beg to switch to his godawful music station. The next up was the Indian-American physician Siddhartha Mukherjee who told an amazing story about his grandmother, her life and how she died. He recounted a memory of traveling on the river as a child and rounding a bend to see the dead being bathed and then put on funeral pyres, and then rounding another bend back into "normal" life. When his grandmother died, he and his father carried out the simple rituals of death -- the wrapping of the body in a white sari, bathing the body and then taking it to be burned. He compared that to the dying he witnessed in the United States as an oncologist. He described a woman with breast cancer who he had treated and who had died overnight after being admitted. He went to her funeral and noticed that lipstick had been applied to her lips and described how the whole process of death had become sanitized. He asked his students later, How many of you have actually lifted the body? What does the weight feel like? He spoke about gravity and the grave. He spoke of how our culture is actively forgetting the rituals associated with death.
Oliver said, That's kind of true. I agreed. It's kind of creepy, too, he added, and I talked a bit with him about why that is so. I told him about a friend of mine whose young daughter died, how she and her husband and their other daughter carried out some of the same rituals, how beautiful that was to me. Oliver, who had just recently attended the Eastern Orthodox funeral of my aunt noted that the service made him feel weird and excluded. He reminded me that on Mother's Day he had seen a giant bee flying about, and in the moment he saw the bee, he thought of Aunt Yvonne and how weird that was, too. We were silent for a bit. I told him that when I die, I would appreciate a non-religious service that celebrated my life and that I would prefer something simple as far as my body goes -- that I'd like to be cremated and my ashes scattered somewhere I love. Then again, I said, since I'll be dead, it doesn't much matter how and what you do with me. Oliver said, When I die, I want my head to be removed from my body and frozen until it can be put on a robot, that way I can be in the future, too.
You can listen to Mukherjee's brief talk here.
Saturday, May 16, 2015
|Hilton Head, August 2013|
Poem Not for My Son
There are things you can't tell
a child -- they'd sit too heavily
upon him, like the crowns
of young royalty:
Tutankhamen holding up
that twelve-pound crust
of gold and emeralds
on his slender neck.
So I gaze at my boy
only when he's sleeping,
when the torrent
won't sweep him off
the cliff, when the beam
won't scorch his retina.
He works out now,
lifting cold black
barbells, his muscles rising
like good bread.
Think of every great thing:
rush of grain
through the elevator shaft,
the crush of water
fathoms down, glaciers
calving, the surge and weight
of tectonic plates. I shut
the door on my love.
Just a faint glow seeping
under the crack.
Friday, May 15, 2015
Oliver cobbled together all of his giftcards and money received for his birthday and bought himself the new Simpsons' Kwik-E-Mart Lego set. He put the whole dang thing together yesterday and this morning, and I have to say it's enchanting. I'm not a Simpsons' watcher, have never really gotten into it, but that's mainly because I've never gotten into cartoons, even as a kid. I do appreciate the humor that I see every now and then, and I still remember the episode when Marge and Homer go to marriage camp and the counselor declares that "it's all his fault" when Homer fails to show up at a therapy session. The other episode I remember is when Homer finds himself on death row and then realizes that he's actually part of a reality show. When I looked it up this morning on Wikipedia, I saw that the title of that episode was The Frying Game, and shortly afterward, I saw on the news that the Russian guy who bombed the Boston Marathon got the death sentence for his crimes. While Oliver screwed together a few more tzotchkes on his set, I told him this news, and his response was Awesome! My stomach curdled, to tell you the truth, even as I continued to read about the verdict, including the words of Sister Helen Prejean who evidently spoke in Tsarnaev's defense. Here's the thing: the institutionalized killing of another human being is nothing but revenge. Let's call it like it is. Strapping a human being to a bed and then injecting him with poison in the dead of night while people watch is more vile than a pathetic excuse of a young man packing a backpack full of nails and dropping it at the finish line of a marathon, blowing off the limbs of innocent people and killing three people. It's more vile because it's a collective effort by an institution and carried out under the guise of justice. It makes me sick, and it's not a reality show.
Thursday, May 14, 2015
Raindrops on roses
Dear, dear Jesus
thank you for rain
and the plumeria.
Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30. The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.
Go back to that link of Mrs. Braddock's fantastic laugh.
Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.
Give me what you got.
Wednesday, May 13, 2015
Hedgebrook isn't a retreat. It's an advance.
I bet you've forgotten that last year I was awarded a three-week writing residency at Hedgebrook on Whidbey Island. I haven't forgotten, but I do admit to thinking it was a dream and that June would materialize and I would be doing the usual June kind of thing which I write about ad nauseum here on the old blog. The thing is, it isn't a dream, and in a little over a month, I will be flying to Seattle and then to my little cottage to write and walk and read for three whole weeks. I met a poet the other day who had just completed a residency there. She was also a judge for the grants, and while the applications are anonymous, she told me that the nearly 1500 of them were of very high quality. She said, You must be a really fine writer, and I demurred and then wondered why I couldn't just accept that I'd gotten one, that I had worked hard for it and that this three weeks is deserved. The place is magical, she said. You will write and you will rest.
Again, a dream.
I told a friend that I write now whenever I have a free moment and certainly for hours and hours each night. There's no writer's block for me, to tell you the truth, and the writing is a pleasure, not work. I write under pressure, the pressure of life, in the spaces around life -- a life of teenagers and the minutia of extreme parenting (the seizures, the diapers, the wrestling with systems of care) -- and it will be quite an adjustment to just write with space and life merged. Does that make sense?
This place expands time.
It's still a dream, I realize, as I type it out.
I'll be working on a project that I've longed to shape into a book. I'll be drawing on some of the How We Do It posts and hopefully weave them into meditations about disability and identity, about what makes us human or Other and so forth. It's inchoate and also pushing to be written. I have my old manuscript as well to shape up and finish, a memoir that has never been given a proper story arc and that demands an ending. I think I have an ending in our cannabis story and hope to gain some of my juju back and finish it up.
Check out who is on the Creative Advisory Council at Hedgebrook here.
Good lord. I told you it was like a dream, and I half expect to get a peck on the shoulder at some point with an apology for what was, apparently, a mistake. Oh my goodness, they might say, the Elizabeth Aquino that we chose is doing cutting edge work about poverty in the Phillipines! We are so sorry! Then they'll hand me a basket of food and a kayak to make my way back to the mainland, back to life and writing in and of the spaces around that life.
Tuesday, May 12, 2015
Kids don't learn cursive anymore, and if they do, they forget it when they don't use it. Yes, I know some of you think the loss of mandatory instruction in cursive ranks up there with the other downfalls of modern civilization and depravity, but I honestly could give a flying foo foo. When prompted to sign his name, Oliver had a moment of panic and then with painstaking effort and concentration did so. He lay the pen down and told me how much he hates how long his last name is and what a pain it is to write it out. That's why I'm changing my name when I get old enough, he reminded me. Oh, yeah, I said, What are you changing it to again?
Luck, Oliver replied, Oliver Luck! Doesn't that sound dope?
Reader, I believe he will change his name when he's old enough to do so, and when you see it printed everywhere you'll remember this tiny little blog post, sprung from my tiny little mother mind.™
Monday, May 11, 2015
You shine, like a sunflower.
I need to divest myself of junk, both proverbial and otherwise.
I have too much stuff.
We are cups, constantly and quietly being filled. The trick is knowing how to tip ourselves
over and let the beautiful stuff out. Ray Bradbury
Sunday, May 10, 2015
The first thing I did this morning was open the long, yellow envelope with the word MOM scrawled across it. Sophie brought it home from school on Friday afternoon, along with a tomato plant in a green ceramic pot. The envelope held a beaded bracelet, purple, pink and pearly plastic strung on elastic. I slipped it over my hand and raised my arm until it stopped on that generous part of my arm above the elbow. When I lowered my arm, the bracelet fell to the floor, so I picked it up and put it in the dish on my dresser that holds trinkets, a safety pin, a Buddha coin, and earring whose pair is lost. A lost pair. Pare me down.
Even in year twenty, these plastic beads strung on elastic, sprung.
Sophie's eyes implore me. Beseech, plead, do something. I'm not sure if I'm projecting the implore, the beseech, the plea. Do something. She and I are knit, intertwined, beads on a string, strung.
Is imagination greater than identity?
It's always the best Mother's Day when your last baby's birthday falls on the same day. It seems like yesterday that I held my baby in my arms, and now he's fourteen years old. Happy birthday, Oliver. I love you so.
Saturday, May 9, 2015
It is the province of mothers to preserve the myth that we are unburdened with our own problems. Placed in a circle of immunity, we carry only the crises of those we love. We mask our needs as the needs of others. If ever there was a story without a shadow, it would be this: that we as women exist in direct sunlight only.
When women were birds, we knew otherwise. We knew our greatest freedom was in taking flight at night, when we could steal the heavenly darkness for ourselves, navigating through the intelligence of stars and the constellations of our own making in the delight and terror of our uncertainty.
from Terry Tempest Williams' When Women Were Birds, Fifty-four Variations on Voice
Friday, May 8, 2015
|My friend Allison and I, melding our tiny little mother minds™.|
People are crazy and times are strange
I’m locked in tight, I’m out of range
I used to care, but things have changed
You know my history with intimidating words. If you don't, please catch up by reading Part One and Part Two.
Today's lesson will be about the word Hegemony. Your instructor, though, will be my friend Allison, and your assignment is to read her blog post today. Here's the link:
Exploring Hegemony with a Tiny Little Mother Mind™
Now click on the Bob Dylan link below and try to listen to the words as you read the rest of this post.
I know that's a lot of links, but as I did all the little cut and paste things, I thought to myself how supremely grateful I am for technology. I read a lot of yada yada about how disconnected we all are, how stupid our children are becoming, how hideous and depressing technology is, and it just makes me yawn. I think about the hours I spent alone in my apartment in New York City back in 1995 with my screaming, seizing baby and one paperback book titled Seizures and Epilepsy in Childhood, a book that had approximately three or four sentences devoted to Sophie's diagnosis. Those sentences declared a very, very bleak outlook for babies like Sophie, and while I clung to the hope then that she would be in the tiny percentage of children who would go on to "do well," I had absolutely no one with whom I could --- well --- meld my tiny little mother mind.™
Let me tell you something. The treatment for infantile spasms -- the disease that I looked up in that paperback book twenty years ago -- is almost exactly the same today as it was then. The first-line treatment is ACTH, a steroid injected intra-muscularly twice a day that wreaks havoc on the immune system, and in our case, caused Sophie to scream 22 out of 24 hours and to develop such a bad case of thrush (yeast growth all over and inside her mouth and genitals) that we had to discontinue it. Oh, and it didn't stop her seizures, so we began adding drugs (8 of them, before she was a year old). I assume the side effects of ACTH are the same now as they were then and understand that one tiny vial of the shit costs upwards of $28,000. In addition to steroids, babies diagnosed with infantile spasms are also now prescribed Vigabatrin, a drug that we tried back in the dark ages of the last millenium when it was non-FDA approved. Currently, if you embark on the Vigabatrin path at any point in your child's seizure career, you are given some forms to sign that you understand the drug can cause blindness. Finally, if your baby is diagnosed with infantile spasms today, in this millenium, you might very possibly be eligible for The Knife. That's it. Twenty years and oodles of technology, yet THAT IS IT.
Don't get me wrong. I'm not blaming doctors or science or dedicated researchers. This is excruciating and deeply mysterious stuff. However, writing letters like the head of the American Epilepsy Society recently did to a United States Senator from Pennsylvania, a tersely worded letter* expressing The Party Line about cannabis and its disapproval is, at best, unethical. At worst, it makes me despair and see not stars but a giant, groaning black hole.
I waited nineteen years watching my daughter seize uncontrollably on over twenty drugs. I watched her development plateau and then stall, spent thousands of hours negotiating with insurance companies to pay for treatments and borrowed tens of thousands of dollars to not only treat those seizures but to pay for childcare as my child grew yet never learned to speak, to use the toilet, to walk unassisted, to eat by herself or to sleep by herself, and fought year in and year out for that child's rights and integrity in literally every single system afforded to citizens of the United States. I won't talk about my sons here, Sophie's father, the marriage, the juggling, the whole catastrophe. Always, the seizures.
Then we tried cannabis, and you know the rest of the story.
Good lord, I've gone on a rant, haven't I? This was about cultural hegemony, a word that still intimidates me. I think I might understand it intuitively, though, and it's somehow sung right here, in these words.
*Email me if you want a PDF of the letter. I can't figure out how to attach a PDF to Blogger. Have a giant swig of vodka or mainline some heroin before you read the letter, though, because it's depressing as hell in its obeisance to Big Pharma --