Hilton Head, Part 4,567,356

So, they look good, these boys of mine! They've spent nearly three weeks at Camp Grandma and Pop Pop, and I was so happy to see them tonight after my day of airplanes and airports and airport spinach dip and airport beer and a large pack of Twizzlers and three New Yorkers and one fantastic memoir (my friend Tanya Ward Goodman's Leaving Tinkertown). Tomorrow I'll catch up with my parents and my sisters and all my nieces and nephews and a few cousins. I might just possibly put on a bathing suit and go into the warm Atlantic ocean and drink cocktails at 5. Or maybe I'll drink a cocktail in the morning and then put on the bathing suit and go swimming in the ocean. In any case, I'm happy to be here and will probably be largely absent from blog world. Don't do anything crazy while I'm gone.

On my way

Camera Wands and Woody Allen

Women's business

First of all, I want to warn you that the following post, flying from my fingertips, is not going to be about disability. It's not going to be about how we do it except for the fact that I like to go to movies when I'm feeling on the edge, and today I skated right near the edge when I went for a pelvic ultrasound to check on what I'll call, here, women's business. I thought I was going to lie back on the examining table in a dim room and patiently allow the technician to first smear that cold jelly on my stomach and then run the little -- what do you call it, anyway? -- over it, searching for my uterus and all the lovely things that lie within. I've had three babies and more than three ultrasounds, so that's what I was prepared for, and that's what Claudia, the thickly-accented technician did to me. Lest you think I've suddenly immaculately conceived one month before my fiftieth birthday, I'll clarify that it was a bit of women's business that I was checking out that pertains to that fiftieth birthday and all the birthdays that will follow my half century mark.

 What I hadn't planned for, though, was the foot-long white wand that Claudia held over me after she gave me a towel to wipe the jelly off my stomach. She fit what appeared to be a condom over it and then explained to me that I would put the wand into my women's business. What? I asked, not quite understanding. There's little camera at end, and you will put in vagina until it goes to here, Claudia showed me a shortened bit of the wand, and I did as I was told. I lay there on my back as Claudia waved that wand all over and inside my women's business, taking what seemed like hundreds of photos, and it was most uncomfortable and perhaps even a bit humiliating and all I could think about was those southern states who have passed laws or tried to pass laws requiring women who are planning an abortion to have a trans-vaginal ultrasound.

Holy shit and shame, shame on them -- a million times over.

After being wanded, I decided a movie was in order and fled to the mall to see Woody Allen's Blue Jasmine. I love Cate Blanchett, and I love Alec Baldwin and I periodically love Woody Allen's movies, so it seemed like a good way to get over the wanding and whatever might come of the wanding, because it's really only in a movie, in the dark, in the theater, that I truly escape.

So, there's the how we do it part of the post.

Let me tell you, though, that I hated that Woody Allen movie, and it left me nearly in tears and more anxious and agitated than I've felt in a long time. It's a clever movie, like most Woody Allen movies, and Cate Blanchett is exceptional in nearly every way. It's even funny, here and there, but the humor is bitter and cruel and reminded me, again, of what I hate about Woody Allen's sensibilities. I honestly believe that he masks his own personal ugliness (both figurative and literal) with glamour and wit, and while I am often seduced by that, I wasn't this time.*** I felt slightly sick by the end, and I felt empty. This time, I found my car very quickly in the parking lot and burst out into the California sunshine, grateful that a movie is just a movie. 

Marking my spot

Twice invaded today -- by a wand and a Woody -- and I am going to take a long, hot shower. Then, I think I'll curl up this evening with Madame Bovary and a shot of bourbon. Because that's how I do it.











*** Three jokes in the movie -- about epilepsy, the word retarded and electroshock therapy referred to as Edison's treatment -- and the laughter in the audience at each did much to send me right over the edge upon which I was skating.

I love this

I am struck by how the River of Pleasure in the Small Things leads directly to the Mountain Range of Impotent Rage.

The sprinkler timer is awry

The sprinkler timer is awry, and right around sunset instead of rise,  the pipes lurch, the heads pop up and the water hisses through spray watering the seeds that Jesus (haysoos) the gardener not the carpenter sprinkled just Saturday. I feel the water sound right through the back screen door as I type. The dog stands alert, the dog thought of squirrels he might catch, the neighbor cat that slinks on by and through the hole in the fence. I hear the hiss of summer lawns, that beautiful phrase of Joni Mitchell's, I lie on my back and wish that I were naked, free of care. I am not. Free of care. The pipes lurch again, the hiss becomes a whisper and then the crickets raise their bows. I have put Sophie in bed too early, it's too early for an eighteen year old to go to bed, the crickets cry, their violin plaint rising. I have too much care. I will lie on my back on the bed and listen to the violins, recall my dream last night. We lay on our backs on a bed. We had no care. Your smile was wide above us, you put down your bow. A curtain blew in the window, I reached up and it ran through my fingers like water, like summer. You hissed and then whispered. Jesus (haysoos) and the woman at the well with the water. We had no care.

Me and Sophamagee

Me and Russell Brand

So, remember my encounter with Russell Brand?

Go back and read about it, if you haven't yet. I should tell you that shortly after my brush with Russell Brand, he led a walkout of the class, including the teacher who had been there for at least twenty years. I had proudly stopped going to that class after being snubbed, and when I heard about the Great Walk-Out, I could have killed myself for having missed it. Evidently, Demi Moore was there that day and packed up her mat and sheepskin with the rest of them and walked out.

Anywho.

You know how much I love living in Los Angeles, and even though I live right in the middle of "it all," the whole celebrity thing is really not a part of my daily life. Until it is. The other day, I walked around the corner and toward CVS drugstore, but I decided at the last minute to check out the newest addition to the block, a fancy-schmancy juicery right next to a hot yoga studio (that I tried once and decided was too hot for the likes of juicy me). I'm not sure whether this juicing craze has hit your city or prairie town, yet, but if not, it's coming as sure as Starbucks did a decade back.

Now, I'm not a skinny, juicing kind of woman (in fact, when Oliver was quite young he told me that I was too juicy to be pretty!), and I sure as hell don't intend on replacing a meal (or two!) with a juice every day like a fancy decorator does who I think I told you about in another superficial post. But, good lord, those juiceries are popping up all over the place here in the sunshine, and I figured since it was in the neighborhood, I'd give it a try. I turned inside the tiny store and stood behind a tall, extremely sweaty (those hot yoga classes are hot) guy giving his order to the decidedly unjuicy young thing behind the register. Reader, you know where this is going, don't you?

The tall guy was Russell Brand who appears to be frequenting my neighborhood yoga studio and juicery because since the events of this story, I have seen him several times, walking down the street and into and out of the yoga studio and the juicery. Do you believe that I inwardly groaned and then was overcome with madness and actually tapped him on the shoulder and asked him what had happened to our beloved kundalini teacher and that 9:00 am class? The moment the words came out of my mouth, and Russell looked down his long nose at me, pausing for a moment mid-text, I died a thousand deaths. I won't tell you what he said because it's not interesting at all. He turned away from juicy me and took the juice handed to him by the unjuicy girl and walked out of the store. I ordered some juicy concoction of ginger, lime and spinach or kale, paid $1,000 and walked, juicy as ever, out.

I miss my boys

I've got nothing to report here, other than I miss my boys. It's weird hanging out with Sophie and The Husband day after day. My mind obviously wanders to the future, when it'll be like this all the time.

Hmmmm.

Time for a snippet of Wallace Stevens' poem Sunday Morning.

I.
Complacencies of the peignor, and late
Coffee and oranges in a sunny chair,
And the green freedom of a cockatoo
Upon a rug mingle to dissipate
The holy hush of ancient sacrifice.
She dreams a little, and she feels the dark
Encroachment of that old catastrophe,
As a calm darkens among water-lights.
The pungent oranges and bright, green wings
Seem things in some procession of the dead,
Winding across wide water, without sound.
The day is like wide water, without sound,
Stilled for the passing of her dreaming feet
Over the seas to silent Palestine,
Dominion of the blood and sepulcher.

[for the rest of this long and brilliant poem, go here]

If you wanted something light and funny here -- well -- I tried to download a video of Oliver dancing and singing, but it just won't happen. Why don't you, Reader, tell me something light and funny?

Dear Delta,

As I ready myself to join the boys and the rest of my family -- my sisters and their husbands, the cousins, the nieces, the nephews, my parents, etc. -- for our annual trek to South Carolina at my parents' house in Hilton Head, I am reminded of the letter that Oliver wrote earlier in the spring. I used to take Sophie to this "vacation" (and I put the word in quotes because it's so NOT a vacation) every year -- did so for a decade -- but it was like going to hell on earth.

At best, I called it my life in a different location, a location with none of the accommodations and routines that we rely upon to stay sane.

At worst, it was four scary plane rides, the expectation that I would have to change a diaper in the airplane bathroom, endure the looks and stares of countless people as Sophie hummed, agitated, a week of no sleep, grotesque humidity, Sophie's seizures, Sophie's accidents (she split her head open, cracked a tooth, fell a number of times with minor head injuries), my own resentment that everyone's life went on as normal while mine did not, and sheer loss and sorrow, magnified a million times over as only proximity to extended family can provoke. 

Don't call me dramatic.

I now go to Hilton Head and join my boys and family for a shorter period of time and leave Sophie at home with her father. It's better all around, an easier loss to bear, at least for me. What I didn't expect -- or failed to realize -- is the effect of all of this on my boys and their desire to travel -- together -- as a family, including Sophie. We often overlook the profound impact of disability on siblings, the ongoing impacts -- both seen and unseen. When Oliver's teacher sent me a copy of the following letter, it hit me like a sledgehammer -- but not hard enough to make me change our plans and drag Sophie back east, again.

However, if Delta would kindly reply to this letter from Oliver, we might possibly venture back east again as a family. 

Dear Delta,

Hi my name is Oliver and I am in the 6th grade. I am 12 years old and I have 2 siblings. One of them is my brother Henry who is 14 years old and in 8th grade and my sister Sophie who is 18 and is severely disabled and has seizures almost every day. Me and my family love to go on vacations but we have to leave Sophie behind. It's not like we don’t want to bring her it's because the plane rides are just not right for her. There is not enough room for her to spread her legs and the hard surfaces are bad because she will hit her head on them and I think you know the rest of that story. So I have been thinking for a long time about making a handicap accessible plane for people like my sister and for people that are elder or have some kind of a disability. I love delta airlines but I think that this would be a huge jump for your company. I am not doing this to be famous or be rich I am doing this for people like my sister and how they might never get to experience or go anywhere on this magnifsent planet that we call earth so pleas delta pleas make this dream of mine come true.                                                                                                                                     Sencerly, Oliver.B

My Half Century Plan

via apartment therapy

So, in exactly one month, I'll be fifty years old. I love a birthday, mine included. I'm decidedly not the no gifts, please girl. So. This is what I want for my birthday:

1. Two weeks in the above little house on the Isle of Wight.
2. A trip to County Sligo, along the paths that Yeats walked 
3. A paddle board lesson in a slimming wet-suit with a cute surfer guy of any age
4. A tiny, perfect mermaid tattoo on my left inner wrist
5. A car tour through Badlands National Park, perhaps tripping on a tiny amount of an hallucinogenic

Reader, don't you wonder which of these I'll do?

First Lines

Tanya Ward Goodman

First lines of novels can either make you stand there in the bookstore, lie there on your bed, grab you so that you don't so much as read but slither into a story and get lost, or they can make you sigh and put them down. Even if I hadn't already read parts of Leaving Tinkertown, by Tanya Ward Goodman, my dear friend and writer extraordinaire, I would be floored by it. The memoir just arrived in my mail yesterday, and I'm nearly halfway through. Here's the first line:

I was conceived in a pickup camper on the New Mexico State Fair Grounds when my parents were on the road with the carnival.

You all need to hop on over to your local bookstore and order it, or go to Amazon and buy it. Right now. This moment. Today. Leaving Tinkertown is about a woman and her father, a beloved and eccentric artist who died too young of Alzheimer's disease.

I'm so excited for the world to finally read Tanya's story, I can't stand it!

Here's another excerpt:

Although they had stopped traveling with the carnival full time, Dad still packed up his brush box and hit the road a dozen times or more each year to work as a showpainter. Sometimes he painted brand new rides like the Sea Dragon and the Flying Bobs in a factory in Wichita, Kansas, but most of the time he headed out to one dusty lot after the next to slap color on rides that had been kicking around the road season after season. Carny folks call this being "with it," which means that even if you're not on the road, the road is always with you.



Watch the video.
Buy the book!

O, would Carlos Danger be John Wilmot, Earl of Rochester

I took down my snarky post of Anthony Weiner the other day, despite the intelligent discussion it fostered. It made me want to take too many showers, squirm too much in the proverbial seat. We doth protest too much. I put it back up this morning, though, because -- what the hell?

This morning, I found the following poem on my poetry calendar, written by an English poet, satirist and courtier of King Charles II's Restoration court. The Restoration was a period in the seventeenth century where the king and his court reacted to the constrictions of the Puritans (and Oliver Cromwell) with hedonism and -- well -- merriment. Charles II had no legitimate heirs, but he did have more than a dozen illegitimate children by scores of mistresses. John Wilmot, on the other hand, died of venereal disease when he was 33.

The poem is startling rich, hilarious in language -- at least to me -- and not a little shocking. It made me wonder whether the lurid texts and photos of today might be the "poetry" one reads in the future.

Reader, what say you?

The Mock Song

I swive as well as others do,
I'm young, not yet deformed,
My tender heart, sincere, and true,
Deserves not to be scorned.

Why Phyliss then, why will you swive,
With forty lovers more?
Can I (said she) with Nature strive
Alas I am, alas I am a whore.

Were all my body larded o'er,
With darts of love, so thick,
That you might find in ev'ry pore,
A well stuck standing prick;
Whilst yet my eyes alone were free,
My heart would never doubt,
In am'rous rage, and ecstasy,
To wish those eyes, to wish those eyes fucked out.

John Wilmot, Earl of Rochester
(1647-1680)

Camp Pop Pop and Grandma

Henry and Oliver have spent the last two weeks with my parents in Georgia, and given that my parents are in their mid and late seventies, I'm sort of in awe with what they've done with them there. They've gone white water rafting, back and forth to Hilton Head in South Carolina, and to Six Flags Over Georgia -- my father has joined them in the raft, on the roller-coasters, out in the boat -- you name it, he's done it. My mother isn't as agile as she used to be but I'm certain has loved them to death. I am proud of my boys and grateful to my parents for what they've given them.

Here are some photos of their weeks away:

 
Oliver evidently cooked Henry's birthday meal -- steak tacos and all the fixings. My father sent me this photo with the caption: He is really unbelievable.

That's my niece Mary, Henry, Oliver and my mother around the table for Henry's birthday dinner party.

That's Henry blowing out the candles of his chocolate layer cake, my mother's birthday specialty.

And here are the whitewater rafting photos -- my father is sitting directly behind Henry who is at the front of the boat -- pretty spectacular, right?

Happy 15th Birthday, Henry!

July, 1999

It's hard to believe that that little munchkin has grown into -- truly -- one of the most beautiful young men in body and mind that anyone will ever meet, but it's true.

Henry is on the east coast with my parents, so for the first time in fifteen years, I don't get to give him a hug and a kiss on his birthday. Last night, though, I sent him a message at the exact moment he was born to us.

Ask me if I care about Anthony Weiner

I don't.

Nor do I care about the Senator from South Carolina who went yodeling in the mountains with his one true love. Nor the other senator who used weird foot movements in the airport bathroom to signal his homosexual urges. Nor the president who was seduced by a girl in a g-string or the one who procured prostitutes on his day off.

I do care and find it very irritating that people do care, that they want to know what these people do, why they do it and how.

Reader, do you care?

Shiny Bits

Today on my walk I listened to the writer David Gilbert talk to Terri Gross of Fresh Air, and at some point he answered a question about writing and creativity, explained that his best are the shiny bits. The Dog and I walked through the fancy neighborhood adjacent to ours, past mansions and bougainvillea, film production trucks and nannies pushing baby carriages. It's sunny here, as usual, and not too hot. The sky is blue, as usual, birds sing and crows caw. I could hear it all through the voices in my ears, even the chink of a hammer on metal, the rev up of a motorcycle behind a hedge. The Dog looked for other creatures, sniffing along familiar paths, but we were both spooked when a beast hurtled itself against a wooden door to our right, the thud so loud the wood seemed to buckle. Jesus Christ! I said and yanked The Dog away, picked up my pace, my ears turned away from the rough barking and back to Terri and David. A block later, The Dog lunged again, I looked up and into the incline of a driveway where, at the top, stood a dog muzzled in black leather, his body wrapped in leather and chains, a ripped-up frisbee hanging from his mouth, the canine equivalent of a bouncer at an S&M bar in Hollywood. I thought about yesterday, the shiny bits. I took Sophie for a brief visit with the gynecologist that prescribes progesterone for her. I left the wheelchair in the car and walked Sophie in. I was optimistic. We waited for nearly an hour before we saw the doctor in her tiny examining room. I held Sophie awkwardly in my lap, her legs whipped up into a cross-legged position. The Gynecologist and I talked about hormones and bloodwork. We talked about medical marijuana. Sophie had a seizure, a huge seizure, and I contained it and her, still on my lap, the jerking, the drooling, the banging. The Gynecologist had tears in her eyes. She waited and offered to help. She said I don't know how you do it. I laughed with rue, squared my shoulders, relied on my physical strength. When Sophie recovered, we left the office and walked back out into the Santa Monica afternoon, the air shiny bitten by sun. I cried all the way home.

Canadian Respite: 3 1/2 Weeks Out

I'm seeing Canada*** about as well as Sarah Palin did Russia from Alaska. She could see it from her backyard, right?













***For those of you new to the old blog, I went on a week long trip to Canada recently, given to me by a wonderful organization called Caregifted.  I hadn't been away, truly away for nearly twenty years, and damn, it was good. I'm trying to hold on to the soul restoration I experienced.

CBD/Medical Marijuana Update

It's about day five, I think, since I started squirting a dropper full of yellow tincture sort of under Sophie's tongue. I haven't seen much effect, yet, and while I at first attributed that to it's too early to see, I'm wondering now whether I have the right stuff, the right dosage, the right proportion, the right everything.

That's the thing with trying new things when you've been trying new things to no avail for nearly two decades.

You read about children getting half their brains removed and they're back to normal! Have you ever considered surgery for Sophie? people ask, and while I know the intent is good (they saw the special! It was a miracle!), I have to bite my tongue, hard, to not scream, We're talking about cutting someone's brain open and taking out half of it, people! My daughter's brain! I say, Unfortunately -- or perhaps, fortunately, Sophie is not a candidate for brain surgery.

I saw a special on a high fat diet the other day, people will say, have you ever considered that for Sophie? (Yes, twice -- once during frontier times, 1995, when Sophie was not even six months old, and then again, when Sophie was about five years old and the experience was so traumatizing that I still sweat when I think about it. I have a chapter in my book titled Two Tigers in a Cage devoted to it, if you'd like more information).

So, back to the CBD/Medical Marijuana. I joined a Facebook group called Pediatric Cannabis Group, an incredibly motivated bunch of parents of children with horrific seizure disorders who converse for what seems like all day in earnest tones about CBD, THC, Charlotte's Web, Cannatonic, Colorado, California, lobbying in New Jersey. There are government conspiracy theorists and housewives and I'm trying to keep up with the threads, and I just can't. I hate threads. I hate conversing about this shit. I hate figuring it out.

Last night, I went to see the new documentary about Bruce Springsteen, and when I woke up this morning, the thread of Thunder Road was making its way to the surface and I want to just follow that thread, the one that Bruce is singing, you can hide 'neath your covers and study your pain, make crosses from your lovers, throw roses in the rain, waste your summer praying in vain for a savior to rise from these streets --

Turn it up.

What are you doing?

Me? Oh.

I'm watching the entire five seasons of Brothers and Sisters, and while it's devolved into pure soap, it's been a great binge. I thank Carrie Link for the addiction.

I just saw the movie Still Mine with James Cromwell and Genevieve Bujold. I loved it.

I'm reading the last chapters of Transatlantic by my Irish love, Colum McCann. I've savored every word although less so than the ones in Let the Great World Spin. 

I'm also going to start Meg Wolitzer's The Interestings and read that along with Flaubert's Madame Bovary.

I ordered but have not yet received this poetry series. There's stuff in there by Lydia Davis, one of my favorite short story writers. She also translated the edition of Madame Bovary that I noted above.

I'm listening to this by Patty Griffin who also sings the song Heavenly Day, featured on our Extreme Parent Video Project that is almost a year old and has nearly 32,000 hits.

I'm also listening to this. We've been lonely. We've been lonely too long.

I like this poem -- it reminds me of my receding respite week in Canada:

Northwest Passage

That faint line in the dark
might be the shore
of some heretofore unknown
small hour.

This fir-scent on the wind
must be the forests
of the unheard of month
between July and August.

James Richardson

So, Reader. What are you doing?

How We Do It: Part XXXI in a Series: Outliers from Holland

Sophie, Car-wash, Los Angeles 2013

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting only cracks in. Sophie's summer school (ESY) teacher sent home a progress report the other day, something I'd normally glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, though, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, the moon's pull, the tide washed over me, outlier.

Hercules' lament

So, yesterday.

Yesterday, I began the day lying in bed underneath a sheet and a lightweight blanket, but it was the large, sparkly and multi-faceted boulder that I had to summon all my strength to push out of the way. The boulder has multiple surfaces, nooks and crannies, and it's difficult to get out from underneath it without scrapes or nicks, not to mention deep bruises. There are sticky parts, too, the kind that demand a response beyond a push away or slither out. For those I use my finger dexterity skills, I flick, they fly, the words. The day wore on. I went to see Dr. Jin for what some might call female troubles of the near half-century mark (I had flicked away the letters that spell c-a-n-c-e-r), received tiny bags of powdered herbs to be dissolved in boiling water and drunk, one cup twice a day. Drink all, she said, but leave small amount and dissolve this powder in last bit. I nodded. Tastes bad, she said, drink fast. I left Dr. Jin and went to a mall to watch a movie to keep the boulder off, let it nip my heels. I saw Still Mine, a movie about an aged couple, a couple very much in love. I sat in the theater, looked around, realized that I was, most definitely, the youngest person there. Gray heads bobbed, voices were raised, the woman behind me spoke of her failing kidneys, her asthma, her friend murmured. The litany went on through the previews, and I considered turning around, waving my Twizzler in her face, asking her to please be quiet. The old man next to me turned his head and barked gimme a break, and she stopped. I shifted in my seat, smiled, the boulder lay quietly under my feet. I laughed in the movie and I cried and when it was over, I walked to my car, the boulder at a distance, respectful. I couldn't find my car, though. I couldn't remember where I'd parked it. I couldn't remember which level, which aisle, which entrance. I walked up and down and around for half an hour or so, and when I finally broke down and cried, the boulder took advantage, climbed on my back, made me sway. A security guard pulled up, and I climbed in his truck, apologized for the weight, the boulder. It's no big deal, he said. It happens all the time. We found my car, I got out of his, he smiled, wished me luck, and I slammed the door behind me, but the boulder slipped out, like it is wont, draped itself around my neck, settled in for the ride home.

Saturday Morning West Coast Re-Post

I stumbled upon this blog post from a few years ago, and while the circumstances are different today (and largely unbloggable,) the post spoke to me:

Thursday, April 9, 2009

Trapeze Artistry and Humor

I think it was Mark Twain who said that behind all humor is sorrow.

I believe that.

I have a good sense of humor, actually, a superb sense of humor. An old boyfriend once told me that I was the person for whom humorists wrote. I liked that comment, felt flattered by it. I guess that means that I appreciate a good humorous anything, although I admit to wanting it tinged with a bit of intelligence (I do hate those gross-out movies and slapstick was never much for me). I giggle like a girl at a couple of my friends' incessant silly jokes (they both write for television), and I don't think sorrow is behind their humor.

My sense of humor can be as dark as it gets and is often the only thing that sustains me. I would add faith in there as well, but I think it's more a faith that God provides something for me to laugh at or see the absurdity of, just when I need it.

I laugh, therefore I am.

That was a riff, I think, on Descartes, but it's Pascal that I really love. I studied Pascal as an undergraduate when I worked on an arduous double degree in English and French literature. I despised French, except for some medieval stuff and, particularly, Pascal.

If I saw no signs of a divinity, I would fix myself in denial. If I saw everywhere the marks of a Creator, I would repose peacefully in faith. But seeing too much to deny Him, and too little to assure me, I am in a pitiful state, and I would wish a hundred times that if a God sustains nature it would reveal Him without ambiguity.
pensee no. 229

And what is all this about? I watched Sophie have what seemed like hundreds of seizures today -- the small ones, the big ones, the drooling kinds, the physical jerking. Etc. I heard the voice of my Chinese doctor in my head along with all the mindfulness training advice and I tried, I really did, to remain calm and mindful, to go with the flow, to not be "attached" in that desperate sort of way. I can do these things, often in a powerful way, but I'm also aware of the thin, thin rope upon which I walk and sometimes hang like a trapeze artist, the rope that threatens to buckle then come loose, then probably snap if I let

it


it only takes one


misstep


and then



that's it.


I'm a wreck, instead of a balancing act.

Humor is peeled back and only sorrow shows.

Trapeze artists are in the circus, after all.

CBD/Medical Marijuana Update

We're three days in to the Cannatonic, and I've nothing to report, yet.

Trust me, I will.

Until then, carry on with all body parts crossed.

Without the Boys

Yes, my days are indeed ordered by my boys and when they're gone I am confused. Untethered. 

MIRACLE “8 MILE”

Bourbon, Meletti Amaro, orange peel

Medical Marijuana, Part 4,346,986

Sophie and I went to the beach yesterday afternoon with a friend of mine and her daughter, a friend of Sophie's. We didn't actually go down to the water, though. We just walked a bit with our girls and then sat a bit with our girls and ate french fries with our girls. When Sophie had a small seizure, I said to my friend that maybe she was witnessing the very last seizure of Sophie's life or the beginning of a dramatic reduction in her daily seizures.

And why was I this hopeful?

Canatonic.

Yes, the name of the high dosage CBD extract that I purchased today is called Canatonic. I don't even know how to describe the morning's proceedings, the visit to Dr. Bullwinkle, the visit to the pharmacy, the procurement of the goods, the drive back home -- the actual giving it to Sophie. I think what I'll do is show you the texts that I exchanged with a friend (I'm in blue and the friend is yellow) -- and please note the time because the speed with which I acquired a medical marijuana card made me think I was a sort of Alice going down the rabbit hole.

If you think I'm crazy, I'm here to say that despite the Alice in Wonderland reference, I've seen and been crazier during the last eighteen years. I got a tincture of high concentration CBD today for less than I paid the Canadian pharmacy in Canada for Sophie's prescription of Onfi, which was 1/8th the cost of the Onfi at my local drugstore. We're giving it a whirl. Reader, keep your fingers crossed.

Anti-Suffocation Pillows

photo via trendir.com

As you know, I am prone to subverting emails that carry horrific information by opening them, reading them, digesting them and then coldly and methodically mocking them. Said horrific information includes nearly everything related to epilepsy, particularly SUDEP, that lovely acronym for Sudden Unexplained Death in Epilepsy Patients. And while I'm enough of an Italian -- and a southern one at that -- to have embedded in my genetic code a proclivity toward deep suspicion and a concomitant belief in the power of jinxes, I use sheer willpower to over-ride those impulses and get down to it.

Let's discuss.

Today's horrific email came, once again, from a wonderful website dedicated to all things epilepsy, epilepsy.com. The lead article is titled Electric Shutdown of the Brain: Is It A Cause Of SUDEP?. Now, if you've been a reader of this blog for any amount of time, you'd know that this is a subject that quite literally strikes fear into the heart of a parent of a child with uncontrolled seizures and a person who struggles with seizure control. And up until quite recently, information about SUDEP was relegated to hushed whispers -- there was very little information at all until, I believe, a group of dedicated families in England started shouting about it. It wasn't until very, very recently, in fact, that there has been a positive plethora of information about SUDEP -- not so much answers or cures or huge understanding of it -- but recognition and awareness about it, along with suggestions for prevention. In any case, I clicked and opened the article, scanned the contents in a vain attempt to find anything new and -- actually -- found something new.

Anti-suffocation pillows.***

I don't think you need me to explain what anti-suffocation pillows are, but I did go onto the UK website and will be ordering a couple very soon. When I do these things -- open emails about sudden unexplained death in epilepsy patients (SUDEP, again!), note my own daughter's high risk of SUDEP (override the Italian peasant jinx mentality in seeking information!), scan for information that I don't already know (why, why, why don't they know more about these things?), skip over to foreign websites about anti-suffocation pillows (!!!!!!!), use a Coin Converter to see how much said pillows cost in U.S. Dollars (cool tool!), wonder if the material they use for the cover is gross, imagining some kind of thin, motel paper like consistency (feel sheepish that aesthetics trump survival for an instant!), wait to order because the pillows are so expensive and I have to do some financial juggling, first (what if she dies before I order the pillows!) -- well, I am struck by the absurdity of this life I lead (and others like me) and filled with gratitude that I have a sense of humor that often trumps panic and paralysis.

Or should I say suffocates panic and paralysis?





***Anti-suffocation pillows available to order HERE.

Unaccompanied minors

Here are my boys, just before they boarded a flight to Atlanta to visit my parents. Henry was fake-glaring, and Oliver was fake-smiling.

Here we are just before they walked away from me and down that ramp and into the plane. It might not be evident, but just about then I started to feel super queasy. Before I leave my children, and whenever they leave me, I hug and kiss them, then tap them on their hearts and tell them I am in your heart, always, and you're in mine.

I know. Tears are welling up in my eyes, again.

You can't see them, but those pilots must have felt my eyes boring into them. 

They waved, and I waved back and pointed to my heart and then back to them. 

Relief

Sophie curled up on her bed yesterday afternoon when she came home from school and slept there, peacefully, for hours.

The Highway to Hell

William Blake (1757-1827)

But, sooner or later, what American society has told him he can do, what it has now made possible, is that George Zimmerman can load his piece, tuck it into the back of his pants, climb into his SUV, and cruise the rainy streets of Sanford in the night, all of his senses a'tingle, all his instincts honed, on the lookout with his hunter's eye for assholes and fucking punks. There's one down the block. What the hell's he doing here? Asshole. Fucking punk. Better pull over and check this out.

from What George Zimmerman Can Do Now by Charles P. Pierce****

So, last night. Henry, Oliver and I walked Valentine over to a friend's house as the sun was setting. We hung out for a while and then walked home. On the long stretch of La Brea, on a Sunday night, there were the usual cars, people walking out of restaurants, buses stopping to pick up lone people at bus-stops. We walked by several homeless camps, sleeping bags laid out, a shopping cart piled to the brim with what looked like crap but was probably essential. I yelled at the boys to slow down on their skateboards, to watch the edge of the street, to not get too far ahead of me. At Wilshire and La Brea we waited for a light and then walked through. We heard sirens in the distance, but we always hear sirens in the distance. This is Los Angeles, home to millions. And then they came. The sirens grew louder, and then they stopped. A police car raced by us, and then another. No more sirens, but lights flashed. Oliver yelled, Look how many! and we turned around as more cars raced by us, three, four, ten, twenty, forty, fifty. Look! Maybe that's an Undercover one! Oliver yelled as a huge black sedan, flanked by police rushed by. We stood there and watched them. We watched like we were at a tennis match, our heads back and forth. There was very little sound, except for the whoosh (the ball hits the racket, the player grunts). Where are they going? Henry asked. Oliver, being Oliver, yelled, They're on the highway to hell. When no more came we continued our way north, to home. We learned that there were protests in Hollywood, that marchers were heading north. We learned that earlier in the day, the police in tactical gear had been shooting beanbags at protesters that had gotten violent in the Crenshaw district, less than three miles from my home. My sons' friends who live in that district posted Instagram photos of events unfolding in their neighborhood. Nothing substantial did happen, but we saw it about to happen and we saw the response and it was silent and methodical and very, very powerful.

I wondered how, if I were caught up in an angry mob, I would convey my solidarity with the protesters. How I could possibly convey my feelings of shame about the Trayvon Martin/George Zimmerman verdict. How I could possibly convey my conviction that violence is never right. I am white. I am privileged, as are my sons, my daughter, and my husband. How could I convey these convictions without seeming like I have them out of fear or self-preservation?

Here's the thing. This culture of violence, of guns, of those who think people kill people and not guns, who believe that their liberty and freedom is at risk unless they can kill, or have the option to kill, is madness. It's insane madness. It's the highway to hell.




****Read that whole article by Pierce that I quoted from above. It'll knock you off your perch to the floor.