Thursday, October 31, 2013
Wednesday, October 30, 2013
On about hour five of seizures, neurologists, and waiting rooms, I felt a tail, trailing behind me, when I lifted, or heaved, Sophie up onto an adult examining table this afternoon to change her diaper. She had already had so many seizures. I was stifling bereft. This has got to stop, I might have thought or said aloud. I can't do this anymore. I felt the tail, its scales the years, too many years. I drag it. Later, still more seizures and back in the car, I heard on the radio that traffic was backed up on the 101 North because of some obstruction in the middle of the highway. I'm not sure what the problem is, Kayjon Cermak of KCRW said, her voice attractive, lilting into laughter. Oh, Kayjon, you save us with your tales of road rage and obstruction, mattresses and ladders fallen off of trucks, fistfights on the side of the road, looky-loos. Oh, yes, here it is. There appears to be a large chain in the street, Kayjon elaborated, Watch out for that around Normandie. My car crept onward, north, while Sophie seized. My lips were tight closed, a trail, a tail behind me of years of doing this. I started at the sound of a police whistle and focused on an officer on a motorcycle, weaving in front of me, back and forth between cars, getting us to slow down from 10 miles an hour to 5 and then 0 and then we were stopped, in a line. The motorcycle was directly in front of my car. He climbed down off it, brown pants, the knee-high black shiny boots, the mirrored sunglasses, the bow-legs. He held his hand out, palm facing us. Stop. I think asshole, I see you and we're already stopped in the middle of the 101, where the hell else would we go? I imagine the perhaps tens of thousands of cars behind me, a tail, a trail of metal and stifled bereft. I am not making this up. The policeman turned around and stepped toward the middle of the highway, reached down and pulled up a long coiled chain in his black gloved policeman hands. He heaved it up and hauled it over and just before he reached the side of the road, he threw it, the chain, this metal tail, over the guardrail and into the brown highway brush. He was made for that moment, I decided, and was dressed for the part. When he was done, he turned to us, the front cars, gave us the signal to proceed and climbed onto his machine and took off. The beast moved forward. No gangs to bang or bust or pillaged villages to rescue, no girls in distress or crimes of passion. He could drag a chain, a tail, from the middle of the road and let it go. Let it go. Let it go. Let it go.
|Never a fair-weather fan|
Even though I woke up this morning to the sound of Sophie having a really big seizure, I am encouraged by the last few days. She has had markedly fewer seizures and looks brighter. I guess the brighter part is subjective, and I could possibly be wishing it so, but I've been doing this thing for nearly two decades, so I'm going to go with definitely brighter. Isn't there a whole school of people who choose to be happy? She's brighter. She's having less seizures. There. I typed that in regular font. I feel slightly less frenzied but thoroughly weird. Anxious. I learned at the conference last weekend that about 15% of those who try CBD fail, particularly those who are on other medications or high doses of medications. These kids do better as the medicines are weaned, particularly the benzos (Onfi is a benzo). If any of you have ever weaned a benzo from an epileptic child (or yourself, actually), it's horrific. I've literally weaned Sophie from various benzos over periods of months and even years. I'm reminded that there's still Charlotte's Web to try, if this particular tincture doesn't do the trick. However, I'm also feeling afraid. The reason for that is all the rumbling on the pediatric cannabis Facebook page about Big Government and Big Pharm -- how they could possibly get their hands on the stuff and make this whole thing a big, giant clusterfuck. I admonish myself not to be a conspiracy theorist, and then I think about our experience with anti-epileptic drugs -- getting them, paying for them -- the whole Onfi clusterfuck (twice, now, I've used that perfect word!!!) that I wrote about ad nauseum on this here blog.
One day at a time. Choose to be happy. Wean slowly, far more slowly than the Powers That Be tell you.
My head is down, figuratively and literally. I blew-dry (or is it blow-dried) my hair this morning, a rare, if not singular, occurrence. I did it like I used to do when I was young. I hang my head upside down and just let that hot air go. This is all part of my transition into cronedom, believe it or not. I'm going to be the crone with great hair. Also, Oliver is taking a mental health day from school which means my mental health is somewhat in question. Henry, god bless him, is at school, excited that tomorrow is Halloween. He is planning on wearing a banana costume to school, a costume that cost $12.99 on Amazon. Thank god for easy kids with uncreative mothers. Oh, and Sophie is home because we have an appointment to see The Adult Neurologist. Now that she's eighteen, we must make that transition to Adult Neurology.
Tuesday, October 29, 2013
I started meeting once a week for a few hours with a group of writers. It's not a workshop group but, rather, a real writing group. We really write. At the beginning, we sit down and chit chat for a few minutes, catch each other up, briefly, on what's happening. Then one person tears up a few strips of paper and we each grab one or two. We write down phrases or words, anything that comes to mind and can be used as a prompt. Then someone picks up a piece of paper, opens it and reads it aloud. Then we write -- the first prompt is for five minutes, the second is for ten minutes, then it's fifteen and then back to five minutes. When the buzzer goes off, we stop typing or writing and read aloud what we've written. We don't comment, except to sigh or smile or laugh or draw our breaths in. Then we're on to the next. We follow in a specific order -- whoever opens the prompt and reads it aloud is the first to read aloud what she's written. Then we go counter-clockwise. It works. This is so good, you writers out there -- so good and so inspiring in the way that writers need to be inspired. You just start with something, anything, and then you write. I've always thought there's way too much discussion about writing in general -- about how difficult it is, about whether or not you're good enough, about the anxieties and insecurities of The Writer. Lately, I've noticed a whole lot of hullabaloo about writing for free on the internet, how resentful "writers" are when they're asked to write online and not get reimbursed. My opinion is that there haven't been too many writers in history that got paid enough money to support themselves and that if you're a writer, you'll just write, whenever and however you can. If you're getting paid and can support yourself, I envy you. If not, get a job, but don't stop writing.
Here are the prompts from a week or so ago:
- My skeleton
- Blood-shot eyes
- A Sense of place
- The Rain They Say is Coming
This week, I got a spark of a short story from the prompt It Goes Like This. Think a man, tattoos, a bald head, the goods, the threat of a cult, Jesus freaks and the slippery slope of desire -- that's what I wrote about for five minutes.
When I got home this afternoon from the usual driving around the city, I had a pile of mail, including two mysterious packages. One was for Sophie, and when I opened it up I saw that it was from one of my oldest and dearest friends with whom I backpacked through Europe in the Let's Go Europe! days. Do you remember those? This beautiful, brilliant woman sent that mermaid to Sophie, and I'm taking it as a token of luck. Sophie did really well today, too, but who's noticing? The other gift was from my funny sister Melissa. She sent me a Ryan Gosling coloring book. She knows me all too well. Henry and Oliver took one look at the gifts and rolled their eyes. Are you really going to color that? Henry asked. I told him that I imagine it will be enormously relaxing to sit and color in Ryan Gosling's lines. You'd think I was stoned, but I'm not. I'm CBD'd excited.
This morning, I splashed my face with warm water and then applied some truth serum collagen booster, followed by A Perfect World moisturizer and then a quick swipe of Telescopic SHOCKING EXTENSIONS mascara.
Sophie is on her second day of high CBD medical marijuana and I'm here to report so far, so good. I've noticed some subtle and not so subtle changes -- not as many seizures and certainly no biiiiiiiiig ones, but it's too early to tell. We'll be increasing the dose tomorrow to see what happens next. In the meantime, I'm off to tell the truth in a perfect world of shocking extensions.
Monday, October 28, 2013
The Soul Selects Her Own Society
The Soul selects her own Society --
Then -- shuts the Door --
To her divine Majority --
Present no more --
Unmoved -- she notes the Chariots -- pausing --
At her low Gate --
Unmoved -- an Emperor be kneeling
Upon her Mat --
I've known her -- from an ample nation --
Choose One --
Then -- close the Valves of her attention --
Like Stone --
All this waiting and talk of miracles makes me nervous, so let's bring it back down to the everyday.
I'm enjoying going back through photo albums, of which I have many, and especially as my boys get older and bigger and more -- let's say it -- teenagerish, I'm trying to remember what it was like back then -- in the olden days. Those two boys right there are growing up, and they're taxing me more than I can elaborate on the old blog. Let's say this, too: they don't kiss each other anymore, and their interaction with Sophie is minimal. I think about it every single day but write about it even less -- the toll the seizures have taken on those boys.
Wouldn't it be incredible if Sophie's seizures stopped? I said to Henry yesterday as we got ready for dinner. (By the way, she only had a scattering of seizures yesterday and was otherwise quite calm, if a bit sleepy.)
I want her to talk, Henry said. He hasn't said that in a long time. When he was small, he wished on birthday cakes and threw coins into fountains with that wish. He whispered it into my ears and probably Santa's. During the first couple of years of Catholic school, when he got a bit Jesusy, he told me that he prayed every night that Sophie would talk. When she didn't talk, he told me that he didn't believe in God, and I told him that I understood but that we don't ever really know why things happen and why they don't. I don't know when the desire for her to talk or the wish that she'd be "normal," began to fade for him, but I imagine it's happened as subtly as he has grown up and away from the boy you see in that photo.
Do you want her to talk so that she seems more like a normal person? I asked him. Asking questions of a fifteen year old boy is like fishing or maybe even plumbing. You put the bait on the line and fling it out, far. Then you start reeling in, slowly, before you lose your concentration or nod off. When things get stuck, you need to put your hands on your hips, cock your head and just look around, first. There's no telling whether it's just stopped up from everyday stuff or there's something more insidious, like tree roots and dirt in the mainline. I can fish and plumb with line and snake.
Sort of, Henry answered. I really just want to know what she has to say.
About the marijuana? I asked, or whether the seizures bother her?
About everything, Henry answered. I want to know what she thinks about it all.
Sunday, October 27, 2013
|Anzo Borrego Desert, 1998|
dedicated to those who know
The fortune states: YOU WILL SOON WITNESS A MIRACLE.
I'm finding the wait exhausting, my sustenance the tenuous connections made, seemingly, in ether, sustained by something shared and necessarily cryptic to everyone else.
Saturday, October 26, 2013
So, we sat with Sophie and hundreds of other people in the above auditorium, listening raptly to Josh Stanley, a few of his brothers (there are 6 of them and 11 kids in total!), Paige Figi (the mother of Charlotte, of Charlotte's Web fame), and Ray Mirzabegian who brought us all together, as well as Jason David who you can read about here. The auditorium was some old-timey venue, and before the meeting started, I felt as if I were on the set of a Fellini movie. Honestly, sometimes my life feels like a Fellini movie on the good days -- and perhaps an Ingmar Bergman on the bad. The news conference was wild and amazing and emotional. I joked to a friend that those Stanley brothers are like Jesus and the Apostles, and I don't mean that in any religious sense. I mean they're on the edge -- perhaps of a sort of revolution -- and they're gorgeous.
I'm glad that I didn't end up wearing the Teletubby costume, because it's all going to happen. We're going to get Charlotte's Web here in California, very, very soon, and until then I have a small bottle of tincture, given to me by someone very instrumental in this whole revolution, and we're going to try it. Maybe even tomorrow.
We talked about facts today; we heard stories (lots of stories from families with kids with epilepsy who began seizing after vaccinations, who began seizing out of nowhere, who were seizing in utero, who have been diagnosed with syndromes and traumatic brain injuries and from people with multiple sclerosis and arthritis and cancer, etc.). We learned about the scientific evidence that cannabidiol has neuroprotective qualities, that it's being used effectively for patients with PTSD, with depression and with all number of neurological disorders and cancer. It went on for hours and hours and it was insane and it was completely and utterly sane.
I will keep you posted. Email me if you absolutely need to know every detail or if you have specific questions. I will try to answer them. If you live in one of the more backward states (ahem -- Texas, above all and most of the southern states), have no fear. These people are working toward making this medicine available to every child that needs it. There are studies being conducted or begun in many of the major epilepsy centers in the country. It will take advocacy and education -- not activism -- because of the draconian federal laws in place that make marijuana equal to heroin and methamphetamine as a strictly controlled narcotic.
I am, of course, excited to see whether this will help Sophie in particular but I'm also certain, now, that it's helping a whole lot of kids like her, for real. It is at once inspiring and utterly draining which I can imagine is mainly because it comes, for us, so very late.
We shall see.
I'm getting ready to attend the medical marijuana news conference with the people from Realm of Caring and have decided to deflect my nervousness by wearing this costume. I'm counting on the fact that most of the 400-plus people in attendance will be those families who have children or young adults with severe seizure disorders and are all thus slightly insane with the stress of it all. Also, the official color for epilepsy is purple, and therefore makes this an appropriate outfit, no?
Plus, might there be someone in attendance who has a distinct fetish for Teletubbies?
If you're in the dark, read Part I here.
Friday, October 25, 2013
This is a Part II from the previous post.
When you decide to stop reading Jayne Anne Phillip's new novel and get out of bed and go to CVS to pick up the wipes that you still need to buy for another eighteen years, you pull into a parking space and open your door at the exact moment a Prius, that stealth vehicle, cuts into your space and pulls up beside you and your door hits its right mirror and rips it off and flings it backward and you scream and a woman jumps out and asks to see your car and then asks for your insurance info and the whole time her face is utterly impassive. She is wearing turquoise shoes and a pink polka-dotted skirt. Your door is ripped up and so is her car. It's impossible to know whether she thinks it's her fault, and you know that it is her fault, but you don't want to upset her because for all you know she could be venturing out for the first time in the day, having spent the better part of it already reading in her pajamas and avoiding everything so you exchange insurance information and you go inside to buy the wipes.
You are shaky and bummed and realize that you should have stayed in bed and finished up Jayne Anne Philip's new novel and used the wipes in the earthquake kit. ***
***Unless there's an earthquake in less than 24 hours and then you'll be glad that you got those wipes but disappointed because you won't be able to get the medical marijuana tincture for Sophie.
|via The Improvised Life|
- Don't answer the phone, even when you know who's calling.
- Keep reading Jayne Anne Philip's new novel in your pajamas and Expressing Motherhood sweatshirt in bed despite the phone ringing and the emails pinging.
- Change the soaked bed-sheets again but only curse about it in your head.
- Believe that since you were awake most of the night because your daughter was awake and then had to drive your son to his godforsaken school in the valley and then had to drop your other son off and then had to race home to dress and brush your daughter's hair because The Husband is incapable of that (and only that) part of her caregiving and then strip the soaked bed-sheets, it's all right to be reading Jayne Anne Philip's new novel in your pajamas and Expressing Motherhood sweatshirt in bed.
- Don't go to the grocery store, again, despite there being no bread, eggs or milk (except for one gallon of raw milk that has mysteriously appeared there, probably placed there by The Husband who has Swiss tendencies to ignore American fears of bacteria and death by food poisoning) in the fridge.
- Don't go to Target for a few necessary items, including wipes because that's an item that you'll be using for at least another eighteen years and you can probably rummage up a pack in the earthquake survival kit.
- Download another book on the Kindle that you might not get to for months.
- Keep reading Jayne Anne Philip's new novel in your pajamas and Expressing Motherhood sweatshirt in bed despite all of the above.
Reader, tell me how irresponsible you can be.
Dare you see a Soul at the White Heat?
Then crouch within the door —
Red — is the Fire's common tint —
But when the vivid Ore
Has vanquished Flame's conditions,
It quivers from the Forge
Without a color, but the light
Of unanointed Blaze.
Least Village has its Blacksmith
Whose Anvil's even ring
Stands symbol for the finer Forge
That soundless tugs — within —
Refining these impatient Ores
With Hammer, and with Blaze
Until the Designated Light
Repudiate the Forge —
Thursday, October 24, 2013
2. FitFlops with Swarovski Crystals
3. Tea Party Lady Patriots
My sisters, whom I almost never write about, are two of the funniest people on the planet. Just yesterday, one of them texted me with a question regarding my memory of a mouse playground that she had gotten one Christmas in the 1960s. When I told her that I only vaguely remembered it, she sent me a photo, and it all came back to me. Then she told me that she'd found a vintage one and bought it and was beside herself with excitement. It was a bargain! she told me, It comes with all the mice! I totally got it and admit to being a little envious about that mouse playground. We exchanged a few more texts about the merry-go-round piece that closely resembled the one on our elementary school playground in New Jersey, and my sister added that she was super excited about the extra slide that she still has from the sixties to add to the playground when it comes in the mail. Like I said, I get it.
The other sister and I like to take photos of outlandish things or make comments about certain style choices that we might see, randomly, on the streets of Los Angeles or Washington, D.C. My text might read:
Denim high-waisted short shorts. Why?
She might immediately text back:
God! With a belt, right?
Her text to me this afternoon was the photo above of Martha Stewart in full Halloween regalia with the word Why?
I texted back that I loved her so much. My sister that is, not Fairy GrandMartha.
Reader, ask yourself why? Cleverest answers to the why of the above photos get a lifetime supply of cupcakes or a snapshot of the mouse playground or -- better yet -- some high-waisted denim shorts. With a belt.
So, I've been keeping a secret. The other day I connected to a wonderful woman whose son also has epilepsy and who shares the same neurologist as Sophie. The Neurologist actually told her to contact me because she (the woman, not The Neurologist) has been using CBD for her son and is seeing positive effects. We've talked on the phone and on Facebook, and guess what? She has a grower in northern California who has a tincture of CBD/THC that is 20:1, and this grower will be traveling down here this weekend for a big news conference about CBD and The Realm of Caring (that group featured on the CNN special Weed) coming to California and I will be getting a bottle of the tincture as soon as this week to try with Sophie.
Did you get that?
This week might be the week that Sophie responds or doesn't respond to medical marijuana. Now, this isn't Charlotte's Web, so I'll still have that to look forward to if this product doesn't help, but I tell you what. It couldn't come sooner. The last few weeks have been some ugly ones for Sophie. Right now, she's lying open-eyed in bed, simultaneously wired up by seizures and dulled down. It's impossible to articulate what that exactly looks like, but it isn't good. Her palms and feet are clammy and dripping with sweat. She has a strange body odor and keeps jerking and periodically going into a full-blown tonic-clonic episode. When she gets up off her bed and walks around her room, she'll stand confused in one spot and then fall over like the proverbial tree and just lie there. She looks pitiful, and if my heart weren't already smushed and smashed, it would be cubist.
We're ready to go.
The Realm of Caring news conference is public, and it's going to be in Glendale on Saturday. CNN will be there. If you want more information and live in California, please email me at elsophieDOTgmailDOTcom. Evidently, Josh Stanley and Paige Figi (the guy who runs the farm that grows Charlotte's Web and Charlotte's mother, respectively) will be there to announce and discuss the upcoming availability of Charlotte's Web in the golden state. Those of us on the waiting list for Charlotte's Web will learn when and how and how much.
Which leads me to the irreverence part of the post. A bottle of the 20:1 tincture costs $100 and a tub of high CBD butter costs $300, and that's less than a month's supply. That's a lot of money, and I imagine Charlotte's Web products are going to cost this much, too. I told my friend Jenni tonight on the phone that I'm not balking at the money. Obviously, if it doesn't help The Soph, it's money lost and there's been a whole lot of that over the last nineteen years (and that would include the hundreds of thousands spent on shitty insurance coverage and drugs that aren't covered and that don't work). If it works, though, and Sophie's seizures are dramatically lessened or -- dare I hope it -- eliminated -- I'm willing to prostitute myself. I told Jenni that surely there is someone out there who would pay me money for favors. There's a partner for everyone, no? I'll even take on a fetish if that helps.
The other day I got into an argument on Facebook with one of my friends and with a few of her friends, who I didn't know. The argument was silly in the realm of things that I contend with -- it had to do with vaccinations and trust in science and pediatricians, mine in particular, and words were flung around. There was judgement (which is fine because I do my fair share of it) and there were sharp and rude words. It's been bothering me a bit here and there since, mainly because I think this young woman is a fine writer and a fine mother and I really enjoyed our pretty superficial friendship, and while I can't really understand why she'd jump on the reductionist bandwagon that she's chosen to leap onto, and even perpetuated, I have realized this week that when you're willing to become a prostitute or help someone with a fetish in order to get money to buy a substance that will help stop your daughter from seizing every fucking day of her short life -- well -- in addition to being desperate, you know something that she doesn't. It's irreverent, but it's complicated.
Wednesday, October 23, 2013
Watching tens of thousands of seizures over nearly two decades, taking care of a child who never grows up but who suffers daily, and thinking every single day of her possible death is endured, for the most part, but it's changing the wet-through sheets again, that undoes me.
Last night, my dear friend Moye and I went downtown to hear Andrew Solomon discuss his recent masterpiece Far From the Tree. I know that many of you have read the book or at least heard about it, but if you haven't, here's a short video that will warm you up:
* FAR FROM THE TREE - book trailer * from Nick Davis on Vimeo.
Solomon was one of the most charming and articulate speakers that I've ever heard, and both Moye and I were overwhelmed by the enormity of his accomplishment. We bought the book and afterward stood in line to have him sign our copies. I told him that I was the parent of a child with multiple severe disabilities and then I thanked him for connecting so many, for voicing so much, for his kindness and intelligence. As you can see in the above photo, he wrote me a simple message, but it took my breath away.
My father, for years and years and years, has always whispered those words to me or said them aloud: Corragio e Molto Forte
Courage and much strength.
Tuesday, October 22, 2013
The moment Sophie was diagnosed with infantile spasms when she was three months old until this moment, nearly nineteen years later, she has been subjected to and participated in any number of therapies. There were the traditional ones: physical, occupational, speech and language, anti-epileptic drugs and tests to figure it all out. There were the alternative and integrative ones: the healers, the osteopaths, the nutritionists and homeopaths, the music and art and augmentative technology and Alexander Technique and Chinese herbs and acupuncture and the laying on of hands. Of those two distinct groups, I will confidently say that the first did nearly nothing, in the end, to stem the tide of seizures and their effects on her development and quality of life. I reminisced yesterday to a friend about the first three years of Sophie's life and then again when we moved to Los Angeles: the endless therapy visits, the sitting in waiting rooms and trudging up and down New York City streets with Sophie in her stroller, then later in a car-seat with two babies, up and down the highways, into the valley and to the west side. No more need be said about the vaccinations that harmed her, the more than twenty drugs that rendered her sleepless, irritable, dizzy and doped, sometimes anorexic and always, always, the seizures kept coming. So many hands. The second group, namely the osteopathy and the Chinese medicine and acupuncture, in certain instances, stopped her seizures (atonic drops with Chinese herbs), but most importantly afforded her more potential and greater comfort. Still, the seizures came, as did puberty (early) and very little else. I doubted what I was doing as much as I knew it was our only option. There were nights when voices and hands spoke all at once in my head, and I lay there, silenced. So many hands. Every three years or so, in the beginning, I was overcome by the all of it -- the all of it -- by what I decided to call too many hands.
Too many hands.
Effective, ineffective, harmful, good -- it's just too many hands.
I stopped all of it, then, shut down the voices, picked one or two things, weaned the drugs, refused to add more, laughed with rue, sprouted ounces and gray hairs, tousled with resentment and swallowed grief, wrote and sat and wrote and sat -- a sort of giving up and giving in, a surrender that keeps hopeful.
I feel a bit of that with Oliver, too, right now. Too many hands.
It's time to stop and think. Listen to my own still, clear voice, above or maybe below those fluttering, well-intended hands.
Monday, October 21, 2013
OUR EDUCATIONAL SYSTEM IS ROOTED IN THE INDUSTRIAL AGE. IT VALUES PUNCTUALITY, ATTENDANCE, AND SILENCE ABOVE ALL ELSE.
from How a Radical New Teaching Method
Could Unleash a Generation of Geniuses by Joshua Davis
So I've written a lot about my twelve year old son's struggles with school, with learning, with dyslexia, with learning disabilities, including auditory and visual processing. None of that writing has been particularly substantial and only barely touches on the depth and breadth of the problem, of the level of hatred that he expresses for school, of the tears, the tantrums, the sturm und drang. I've also written extensively about Oliver's uncanny ability to perceive the world and the people around him, about his curiosity, his intelligence, his sense of humor and his hilarity. I know in my heart that he will be fine -- in the long run -- but just how arduous that run is remains a question, and not just how arduous but whether the arduousness is even warranted.
Right now, I believe on a deep, gut level that it shouldn't be this hard.
Today I spent a good part of the morning researching home-schooling and also looked into a number of alternative schools. Quite serendipitously, a dear friend of mine sent me the article from which I quoted above -- click here, and you can read the whole thing.
I'm shaking things up, for real.
The other day, I got an alumni magazine from the private school that I attended in Atlanta, Georgia for middle through high school. While I value the education I received back then and know, particularly in English and writing, that it helped me to become the writer I am today, I was appalled by a letter included with the magazine that asked alumni help in the current capital campaign to raise $88 million by 2015. I believe they are close to $75 million and need only close that gap of $13 million in three more years.
ADVISORY: Language from here on out could be offensive to some.
Here's my response: What the fuck?
I can hardly go into what all of this means to me -- the enormous and ever-growing disparity between the extremely wealthy and those who have less and then even nothing. What is my alma mater buying with this sort of endowment? Are these children better educated and more prepared to succeed when they're finished? What is the measure of success? Where does it end?
Again, what the fuck?
I might be starting a mini-revolution here at chez Crazy where the disabled and the abled live side by side, where the Catholic school boy rubs elbows with the revolutionary and where the primary caregivers live forever. Stay tuned or tune in with your own riffs.
Well, if you knew the myriad things I would be doing today or even thinking about, you'd read no further. In lieu of telling you about them, then, I'll post a poem -- as always one that I flipped to randomly and that so perfectly addresses my day -- my moment -- both the disconnection and the reflection --
A Raincoat's Embrace
Well, you knew this had to happen:
that you would sit up in bed one night, thinking,
I feel like I have already left this world
And maybe you have. Or maybe not. In this life,
so little is revealed
But if you stand at the window long enough,
you can watch the bad hours peel themselves
back from the horizon and float away, as if
no one needs them anymore
In other houses, lights go on. Children are
awakened. Coffee is poured
In your house, the embrace of a raincoat
brings back memories
An unexpected kiss finally explains itself
and you agree (we all agree) to soldier on
Sunday, October 20, 2013
Lots of funny comments on that last post about how we caregivers are going to live a long, long time -- a lot longer than you normal folks.
I left yesterday morning for Palm Springs with my friend Cara. We had a quick, 24-hour getaway, which will probably guarantee that I live even longer than I might have, and I sat mainly here on the bed and played WordFeud with my friend D, read a New Yorker and a Real Simple, and started Jayne Ann Phillips' new novel. We also sat by the pool and then stood in the pool. Then we went back to our room and watched The Butler in the middle of the afternoon. I ate steak for dinner, drank a fizzy bourbon cocktail and a beer, took a bath in an enormous tiled bathtub and fell into bed slightly buzzed by more alcohol than I've drunk in a long time and the hot water of the bath. I fell asleep and woke once or twice to the hum of the air-conditioner and the relief of knowing that in the morning I'd still be here, on the bed with the cool, white sheets in the room with the cool, blue door.
Outside, it looked like this (no filters, baby! -- the sky is that blue!):
and this (no shots of me in my bathing suit, unfiltered!):
and inside it looked like this:
and I looked like this:
and not like this (remember, that's me, sometime in the distant future):
On the way home this afternoon, we passed these guys in this car:
There's no telling where we'll be tonight. Your guess is as good as mine.
Saturday, October 19, 2013
The above photo of me is one of those computer-generated things that projects what I'll look like in the distant future. Apparently, I will have thinner arms, but my feet will still be on the large side. I'm relieved that I won't have to wear a bra, though, and I imagine that cigar is filled with weed, because Sophie will have finally become seizure free when we get a hold of the CBD, and in lieu of killing myself out of frustration that I wasn't able to get it before I was an old woman, I'll just start smoking it myself. Let go, let God, as they say.
This is the title of an article I saw last night on Disability Scoop:
Caregivers Live Longer, Study Says
You know what that means don't you? We go insane, but we live forever.
Ha Ha Ha Ha Ha Ha Ha.
In all seriousness, evidently an early death isn't guaranteed if you're caring for a disabled child or elderly parent and are utterly stressed out. There are actual health benefits, according to the study done on more than 7,000 caregivers.
Pass me the weed.
You can read the whole shebang here, from the very eminent academic/scientific The American Journal of Epidemiology.
Long live the caregiver!
Friday, October 18, 2013
My friend Greg is a wonderful father, husband, a poet, a writer and a die-hard advocate for children with learning disabilities. He's also a published writer, and his new middle grade novel is called The 14 Fibs of Gregory K. Here's a trailer for the book:
Greg told me that there's a poetry angle to the book as well, and that Fibs in the title refers both to lies and to a 20 syllable, 6 line form of Fibonacci poetry that Greg got "sorta famous for" back in 2006 when he appeared in The New York Times! There are poems at the start of each chapter (save the last one), a few others in the text, too, and Gregory K.'s love of writing and poetry is what drives the whole plot. Geared toward kids aged 8-12, I'm here to tell you that even crones enjoy it. Greg himself is 97 years old!**
You can order the book HERE.
You can read Greg's blog HERE.
And, if you're really, really fortunate, you can hear Greg read from it and get a signed copy tomorrow, Saturday, October 19th at Flintridge Bookstore and Cafe from 3-5 pm. If you're not so lucky to live in southern California, you can listen to it live online, from 3-5 Pacific Time!
Just kidding. Greg is in the prime of his life.
What I'm thinking about today is the onset of crone-dom and not in a jokey, silly sort of way, except that there are plenty of crones out there who will probably chuckle softly to themselves that I would deign to believe myself a crone at the tender age of fifty. I feel it approaching, though -- cronedom -- and I feel it as a lassitude and resignation, a comfortable giving-up and giving-in, a sardonic eye tilt and thinning lip, an exasperated descent into temporary insanity, a skill in holding ridiculous paradox, a desire to live and to be done with it, a quickening pulse, a pull between the legs, fullness drooping, a chopped off finger wag, abstraction made concrete.
Crone talk over tea (from left to right):
Watching a child seize, day after day after day after day for years on end imposes a sort of discipline. You can actually live like that.
I dare you, to do what I've done and feel any other way.
Barn's burnt down,
Now I can see the moon.
Red lips, black hair -- they disappeared, but I taste them both, dearie.
Thursday, October 17, 2013
|Vintage Brain Surgery illustration, via Scientific American Magazine|
Here's Part 1.
And here's the rest:
“There have been great advancements in the area over the last ten or so years,” he continued, “and outcomes can be significantly more positive than they ever were.”
I shifted in my seat, nodded my head, probably asked a question. I had done a lot of reading but knew only a little about brain surgery.
“Basically, there are two ways to go: a corpus collosum or complete hemispherectomy.” Dr. N swiveled around in his chair and reached behind him for one of those replicas of the human head, similar to the one my mother had in her closet when I was a little girl. That one was made of Styrofoam, I think, and she used to put her wig on it, when wigs were popular and even normal people wore them, like jewelry or a belt. Dr. N’s head, though, was skin-colored and while it wasn’t really lifelike, it was a lot creepier than my mother’s. At the top of the head, a red line bisected the head and ran down the back, toward the neck. It was this line that Dr. N traced, showing me.
It was also about then that I started feeling really strange. I was asking questions, I’m sure, intelligently, because I’m good at that. I’m not particularly emotional with doctors and am able to keep my composure despite the gravity of the situation. I felt all tingly, though, and was straining to hear his words. It was almost like when the dentist placed the laughing gas mask over your mouth before a procedure and his voice sounded like it was coming from the far end of a tunnel. Dr. N, though, unaware of anything strange going on, continued.
“You see this line going down the center? That separates the right and left hemispheres of the brain. Now, in a corpus collosum, you can basically snip that line and actually break the connection between the two sides. If you do that and it works, whatever side of the brain the seizure originates will stay there, not travel and affect the whole brain.”
Snip, snip, I think and right about then my head separates from my body and floats on up over me, over the desk and Dr. N and hovers there, gently looking downward.
“Now, in a hemispherectomy, what you’re basically doing is cutting out the entire right or left hemisphere of the brain and then filling up that cavity with fluid.”
Since my head is floating over my body, I actually see myself, nodding, murmuring, leaning forward and watching Dr. N trace the red line down the brain, turning it in his hands. I see my mouth move, talking to him, but I can’t hear what I’m saying. I’m impressed, though, that I am talking at all about such a thing. The difference between snipping the connections and removing the entire hemisphere. Of my baby daughter’s brain.
I don’t remember when my head or my consciousness rejoined the rest of my body. I don’t remember how or when I walked out of the doctor’s office that day. I do remember knowing that I had had a strange out-of-body experience that some might call dissociation but to me was just part and parcel of the whole reality of caring for Sophie. Is there any other way to respond when you’re discussing brain surgery on a child?
People come up to me periodically, whenever public television airs some special or they read about the miracles of brain surgery.
“I saw this program last night,” they’ll say, “and this kid had this weird syndrome where she seized basically all the time. Well, they took out her brain, I mean half of it and the other half just picked up where the removed one left off, and now she’s great! Have you ever heard of that or thought about it for Sophie?”
I listen to this kind of enthusiasm politely, explaining that Sophie is actually not a good candidate for brain surgery because her seizures are multi-focal, meaning there isn’t one or even two spots where they originate. There are many. But, actually, what I really want is to scream, “Are you fucking out of your mind? Do you realize what you’re talking about? What they’re doing? Taking out a chunk of a person’s BRAIN? A child’s brain, who can’t even make that decision herself? How incredibly invasive that is? How utterly horrible?”
Yes, yes, I realize that science can work miracles and that many people’s lives are saved and the quality of their lives is vastly improved. But I can’t quite wrap my own brain around the idea of cutting some of it out. Isn’t who we are somehow encoded in our brain, in that organ? Would cutting it out inevitably “change” that essential part of us?Right? Or not? Where I really get stuck, though, is how to make that decision for another person. Because despite the fact that Sophie is my daughter and, at the time, was an infant, and her father and I have the responsibility to make decisions regarding her welfare, I believe deeply in her personal integrity, her autonomy, the idea that she exists, complete and whole. Who am I or who are these men and women who make these decisions to cut out an essential part of who she is and discard it? Arguments, I know, could be made that I am ignorant, that the brain is an incredibly plastic organ, capable of regenerating, compensating and recovering to an incredible degree. I think that if it were a question of life or death, I would surely take the chance on life. Yes, yes, take it out, I’d say, if that will save her. Anything to save her.
Thank God I never had to make that decision, though, so I can nod my head when people tell me about the miracles of brain surgery. I’m struck by how casually we all live our lives, really, in these advanced times. We can sit in doctors’ offices and intelligently debate the difference between cutting the corpus collosum and the hemispherectomy. We can watch a two hour special on a network newsmagazine, believing that those people’s lives are so amazing, can you imagine? While sitting in the dentist’s chair, waiting to get a cleaning, we read an article discussing the ethical decisions regarding a woman’s face transplant. I feel like we were taken from the casual life eleven years ago when Sophie was first diagnosed and dropped into this one of constant impossible decision-making and a low grade anxiety broken only by the adrenaline rush of true crisis. And it’s no wonder, then, that my own brain was able to so effortlessly release itself that morning – Snip Snip -- in the doctor’s office, let go for a minute and watch, observe from a different position.
|Medieval Brain Surgery|
I imagine that got your attention on a Thursday morning, and I hope the presentation/performance that I'll be doing this afternoon in Tarzana will get some as well. I have the distinct privilege of reading an essay I wrote some years ago to a group of nurses and medical personnel with other mothers in a sort of mini Expressing Motherhood show. Brain Surgery is one of the chapters in my Book That Isn't Yet a Book, and it describes my experience discussing her possible candidacy for brain surgery when she was a baby and just diagnosed with epilepsy. Despite the near twenty years that have passed since that discussion, my feelings about brain surgery are much the same, and while I am, admittedly, distinctly irrational about cutting out a part of someone's brain, believing it to be something that we will perhaps one day look upon as barbaric (as we do lobotomies, let's say, or bloodletting), I understand that the techniques are becoming more and more sophisticated and outcomes more positive. That being said, I'm grateful not to have to make that decision for Sophie and can, instead, stay squirming in philosophical enquiry about it.
Here's the first part of the essay -- given its length, I'll post the rest later this afternoon.
I traveled across the country to Los Angeles to see Dr. S , a pediatric neurologist known as “the best of the best,” and when he examined Sophie she was still not a year old. He expressed his dismay at the relatively poor outlook for infantile spasms, a rare form of epilepsy that Sophie had recently been diagnosed with in New York City. He recommended that we have a pre-surgical work-up. (Later, much later, when I had met many parents of children like Sophie, we would joke about this doctor and call him “Dr. Knife”). He wrote in his notes, which I still have in Sophie’s medical records file, that Sophie was “a bright baby of just under one year.” I loved the “bright” part, pulled the paper out often when I had gone back to New York. That one word sustained me, sometimes, when I thought I would go wild with uncertainty.
But after that visit with the esteemed neurologist of the west coast, when I put Sophie into her car seat in the white rental car that I would drive to the airport to catch our flight back to New York, we were on the road for less than ten minutes when she began to have what seemed like hundreds of very small jerking seizures. I was driving on unfamiliar roads, on the famous Los Angeles freeway, but I was driving with one eye looking in the rear-view mirror, my lips counting, “one, two, three, four….it’s alright Sophie, relax, twenty, come on Sophie, relax, fifty…” and so on until her tiny arms which were methodically straightening, then stiffening, then bending forward and her head bobbing and her mouth twitching, then grimacing, finally stopped and she collapsed forward, her head hanging over the five-point harness of the car seat. She had more seizures in that car ride than I had ever seen up to that point. With no explanation, and there never was one, I attributed the episode to her “bright” appraisal of the esteemed doctor and her listening in as we talked about her condition, her prospects, her brain and the possibility of surgery. In other words, she knew at some level what was up and given the sensitivity of her brain, could only respond to such stress with seizures.
Back in New York City I made an appointment with our neurologist to discuss the recent visit to Los Angeles. The day of the appointment, I didn’t have Sophie with me because of the seriousness of the matters being discussed. I had made a resolution after the incident in Los Angeles that I would try my hardest not to talk about her condition in front of her. A “cutting edge epileptologist” who looked to be about 35, Dr. N wore his blond hair with a distinct, vulnerable part down the side, crisply pressed khaki pants, a white button-down shirt with a bow-tie and shoes that I can only describe as Buster-Brown-like.
“Mrs. Aquino, please come in,” the doctor stood at his door and beckoned to me. I was sitting in one of those curved metal chairs with stainless legs and flipping through an old Scientific American magazine. I put the magazine down and stood up abruptly, nervously and walked down the hall to his office.
He had already seated himself behind an enormous desk covered with papers, stacks of journals and magazines and what appeared to be a child-sized replica of the human brain. The cauliflower folds looked tough and protective of the smooth pink surface beneath. The brain sat on a huge book, one of those diagnostic tomes that doctors flip through in the privacy of their offices, when they can’t be seen looking for information not easily recalled.
“Sit down,” he said, motioning me to one of two armchairs angled toward one another and the imposing desk in front of them. I was alone, though, as Michael was at work, and I awkwardly pulled one chair out and then sat in the other.
“So, what can I do for you today?” Dr. N. is an obviously intelligent man but sweet as well. He is thoughtful instead of arrogant, appears earnest and concerned. His face is placid, his eyes warm but they blink like a cartoon child’s. He is gracious, almost humble, and he asks questions in a manner that gives you the sense that you are making the decisions, not he. When I relayed to him the information that I had recently received from the acclaimed Dr. S in Los Angeles, Dr. N leaned forward and put his hands together, fingertip-to-fingertip, like a little tent. He leaned his chin on the top of the finger tent, blinked several times and listened intently. It seemed like what he heard was going into his head and then down through his fingers into that tent on his desk. Neurologists have so much power, you see, what with their delving into the human brain. After a year of dealing with them, I was painfully aware of that power and sensitive to inferences. I wanted to get in that tent.
Dr. N is a good listener and rarely interrupts, so when I was finished, he let go of the finger tent pose and let out a long, “Hmmmmmm.”
It was my turn to lean forward, which I did, restraining myself from placing my own hands on the desk in front of me. I willed them into my lap, to be still. I clenched my knees.
“Well, let’s talk a little bit about brain surgery,” Dr. N began.
Wednesday, October 16, 2013
That's my beautiful boy, getting ready to jump down and pick up the screen that fell out of the window. He came home early from school today, and I can't even begin to tell you how E A S Y it is to hang out with him.
I did some hard-core cleaning today -- mainly in the boys' bedroom. They have an incredible amount of stuff -- let's be honest and call it shit -- piled in every nook and corner, so I got a big box and literally swept it off the shelves and into the box. I'm going to tell them to go through the box and only remove the things that they really, really value. Something tells me that most of it will appear, again, on the shelves or in the drawers or under the bed, but at least, now for one day, the room is pristine.
I also walked around the corner and got a pedicure. I splurged and did the hot stone treatment, and while my legs and feet were being massaged with hot black rocks, a woman called me and we talked for the rest of the time about medical marijuana, about CBD butter and tinctures and how it's helping her son and how everything, everything is moving toward it. We're going to meet next week, and she's going to let me try what she has been using for her eight year old son quite successfully.
The universe is abundant.
The Pediatric Cannabis Therapy of California Facebook group has a whole thread of comments about the upcoming full moon, Santa Ana winds and increased seizures in our kids.
The universe is strange.
I might be insane, but as I told a friend, I'm calmly insane.
The universe is constantly trickling through my fingers, and I can't hold onto it which is probably just right.
I love a questionnaire and I love a survey. I also love books and reading and anything literary. So, in a break from our regular programming of politics, disability, parenting and poetry, I've taken Maggie May's lead and answered the following questions. I'd love to know what your answers are, so feel free to leave long comments or answer one or two!
Authors of whom you've read the most books:
Virginia Woolf, Toni Morrison and Fyodor Dostoyevsky
Best Sequel Ever:
I can't think of one. Do books have good sequels?
My Brilliant Friend by Elena Ferrante
Drink of Choice While Reading:
I don't drink while reading. Oh, maybe water sitting by my bed.
E-reader or Physical Book?
I love my Kindle for memoirs and "quick" reads. If it's an author I love or a book that I've anticipated, then a physical book is necessary. I'm finding that when I read fiction, I become more engrossed with a physical book and that the e-reader is distracting -- something about how fast I read and how weird it is to turn pages on the Kindle. The Kindle, though, has saved my budget AND enabled me to live in a house that isn't completely over-run by books or at least only partially so --
Fictional Character You Probably Would Have Actually Dated In High School:
Good lord, what kind of question is this? I think I had a crush on Dickon the rosy-cheeked moor boy in The Secret Garden. A bit later, though, and I would have gone for the main character in The English Patient -- what's his name, again?
Glad You Gave This Book A Chance:
I finally read a Don Delillo novel about a million years after I should have. It was Falling Man, and it blew me right out to sea. I had thought until I picked it up in the store that I would have to die never having read a DeLillo. It was a weird kind of blockage. I'm glad I broke through the intimidation and read his perfectly crafted sentences. Given how much I've read, I was also late to Updike, and when I read the Rabbit series in my forties, I felt incredible pleasure -- the writing, the vulgarity -- even the misanthropy -- appealed to me.
Hidden Gem Book:
Heaven's Coast by Mark Doty
Important Moment in your Reading Life:
Every moment of reading has been important, from the Big Red Book in Mrs. Semel's first grade class to the stack on my bedside table right this instant
Remainder by Tom McCarthy -- sort of strange and creepy and interminable, really
Kinds of Books You Won’t Read:
Trash and popular fiction; anything by Dan Brown because he brings me
Longest Book You've Read:
The Way We Live Now by Anthony Trollope when I was pregnant with Sophie. God, it was good. I was depressed when I finished it, so I cheered myself up by clomping down the six flights of stairs in my walk-up apartment in my big brown and beige checked flannel maternity dress, to the Haagen Daz on the corner where I ordered a hot fudge sundae with whipped cream and nuts every single day before hauling my nine month plus two weeks extra pregnant self back up.
Major book hangover because of:
anything by Cormac McCarthy. Those books are dark. Oh, and I felt like I needed to take a shower after reading Gillian Flynn's trash novel Gone Girl. Generally, "easy" reads that are wildly popular give me hangovers because I'm so depressed that they're so successful. Go ahead. Confirm that I'm a snob.
Number of Bookcases You Own:
One Book You Have Read Multiple Times:
The Secret Garden by Frances Hodgson Burnett (just one, though? How about The Brothers Karamazov? Or Half Magic? To the Lighthouse and Mrs. Dalloway --
Preferred Place To Read:
In my bed.
Quote that inspires you/gives you all the feels from a book you’ve read:
So hope for a great sea-change/On the far side of revenge./Believe that a further shore/Is reachable from here./Believe in miracles/And cures and healing wells from The Cure at Troy by Seamus Heaney
That I tried to read War and Peace multiple times. I also regret all those horrible French books I read in college -- in French.
Series You Started And Need To Finish (all books are out in series):
I read the first Harry Potter and enjoyed it, but I admit to not really caring about reading the rest of them. Do I need to finish them?
Three of your All-Time Favorite Books:
To the Lighthouse by Virginia Woolf
The Brothers Karamazov by Dostoyevsky
The English Patient by Michael Ondaatje
Unapologetic Fangirl For:
Very Excited For This Release More Than All The Others:
I'm always disappointed by new releases of contemporary authors I love the first time around, but I am looking forward to the new Jayne Ann Philips and to anything that Lorrie Moore decides to write --
Worst Bookish Habit:
I'd rather read than talk to you.
X Marks The Spot: Start at the top left of your shelf and pick the 27th book:
The Great Fires by Jack Gilbert
Your latest book purchase:
Quiet Dell: A Novel by Jayne Ann Phillips
ZZZ-snatcher book (last book that kept you up WAY late):
My Brilliant Friend by Elena Ferrante