Friday, September 4, 2015

Books I'll Probably Never Read*



Life's too short.

Never say never.

But.


  1. The rest of Proust
  2. David Foster Wallace's oeuvre
  3. Jonathan Franzen's new novel
  4. Any future book by Donna Tartt
  5. Any book in-between the first one and The Goldfinch by Donna Tartt
  6. New YA books
  7. Old YA books
  8. Anything categorized as YA 
  9. The rest of Thomas Pynchon
  10. The Count of Monte Cristo
  11. The Life and Times of Tristram Shandy, Gentleman by Laurence Stern
  12. Manga Shakespeare
  13. Anymore Shakespeare
  14. anymore Saul Bellow






* Because I don't want to be bashing contemporary writers, this list is basically of books that I have no desire to read, have read a bit of and didn't like, I'm bored by and in the case of Proust (who's dead), I've despised. 

Thursday, September 3, 2015

My Syrian Relatives



Those are my Syrian relatives who immigrated from Homs in the early part of the twentieth century. My grandfather is the second from the left, one hand on his mother's shoulder. Grandpa was a tough guy, smoked packs and packs of cigarettes, cursed in Arabic and called me Rosalita because I looked more Italian than Syrian.

I think about my Syrian relatives whenever I read about the chaos and tragedy of Syria. I imagine people with the same blood as mine are running through the streets or away. Like everyone, I am struck dumb by the constant stream of photos of the millions of desperate refugees, particularly the one of the little boy, face-down in the sand at the water's edge. What do we do in the face of such madness? What do we even think? I can't look away. I can't not think about it. I wish that I could do something about it.

I don't believe in borders, in walls and nations, to tell you the truth. I feel no pride as an American, but rather fortunate, lucky to be here and not Syria. Lucky, not proud. I admire the actions of Germany and Iceland who have announced programs to take these refugees. I wish that I could offer my home to a refugee, but how do I do that? How do we do that? I live in America where the ruling class can't figure out a proper immigration policy, where a leading candidate for president wants to build a giant wall at the border to keep people out, where people complain about illegals getting an education or a driver's license or food stamps. I'm an American and complicit. I'm also Syrian, and I want to do something.


Wednesday, September 2, 2015

Large Gargantuan Doctor Minds™

The Third Circle of Dante's Hell, The Inferno
Gluttons



Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.

At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.

I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™

Anyhoo.

Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them! 

Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:

Studies? Studies? 
More research? 
How about Sophie? 
Why the hell are you not responding to Sophie? 
Here's your study! 
Here she is!
Look at her!
Pay attention! 
Listen to me! 
Listen to others like me! 
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens! 
Be excited! 
Be curious! 
Take notes! 
Follow our progress! 
Take it seriously! 
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board! 
Take it!

Tuesday, September 1, 2015

Cannabis Oil Questions Answered, #7



When you give Sophie THC, do you worry that she is getting high?


No.












* That was the short answer. Here's the long answer. We are currently supplementing Sophie's cannabis oil with four or five drops of THC a couple of times a day. The THC seems to help with the Onfi withdrawal symptoms, particularly the tremoring that she was doing, over and over, and seemingly all day long. The tremors looked like seizures, even, as they were jerks -- hard ones -- in her arm and leg. When she sat on the floor, cross-legged, she'd bang her knee over and over on the floor. If you walked with her, she'd jerk her arm, over and over. They were not seizures, we found, through that godawful EEG. She doesn't do it anymore, as long as we give her those few drops of THC. As for getting high, if she feels a bit high, I really don't give a flying foo-foo. Somehow, we are supposed to accept the fact that every single one of the drugs that are given to our children from birth onward have hideous side effects, or are being used "off-label," or have an "unknown mechanism of action," yet are discouraged from trying a medicine that has thousands of years of history of use, reams of studies already done, no reported deaths and arguable long-term impact on the brain. 

I know, I know, I know. I've talked about this until I'm blue in the face.

An older man in the parking lot of Trader Joe's noticed the End Epilepsy bumper sticker on my car. He asked me what it was all about. I told him that my daughter has epilepsy and that I used to be on the board of the Epilepsy Foundation of Greater Los Angeles and that I supported its efforts to end epilepsy. I also told him that my efforts now were more for anyone or anything that supports the medicinal use of marijuana. He told me that he has an adult son who had terrible seizures throughout his childhood and how he wished they could have used it. He asked me whether Sophie was using CBD or THC or both. I said, both. Then we laughed at people's concern over whether an epileptic might get high with CBD and a few drops of THC. I wish! I said. In fact, I told him, I support the legalization of marijuana both recreationally and medicinally, and I'm tired of making the distinction.


Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

Sunday, August 30, 2015

Oliver Sacks' Illumination


Oliver Sacks' Anthropologist on Mars was published in February of 1995, and Sophie was born one month later. By that summer, she had been diagnosed with infantile spasms and we had begun the journey that would take us to proverbial other planets. I read Sacks' book with the same relish that I'd read his previous ones, but this time I felt he was speaking directly to me.

I lived in New York City in the nineties, not far from where Dr. Sacks practiced. I had looked up his address and telephone number in the phone book. I thought he sat behind a great wooden desk with a small light that illuminated not only the paper in front of him but also the consciousness of the people about whom he wrote. I fantasized about calling him and imagined we’d have a conversation about Sophie – not so much about stopping her seizures and making her normal but rather about her integrity as a human being despite whatever peculiarity or abnormality she possessed. I never called Dr. Sacks, but I did read everything he wrote. I also sat in a chair in the third row from the stage where he stood reading aloud from his work many years later in Los Angeles. Because his words had so deeply resonated with me, sustained me, really, during some of my darkest days as I wrestled with Sophie’s disability, her seizures, her inability to speak or care for herself, her identity and mine, I felt an enormous impulse to jump on the stage and embrace him. I didn’t do that, either.


This morning, I woke to the news that Dr. Sacks had died. I understand that some disability activists have criticized him for exploiting his patients’ disabilities in the interest of narrative. Scientists have criticized him for emphasizing narrative over the clinical. More, though, have loved him and been illumined by his writing. It’s been more than twenty years since I read An Anthropologist on Mars, and while my daughter’s brain has remained a mystery to the neurologists that have failed to help her clinically, her integrity as a human being, reinforced in my own mind by the writing and life of Dr. Sacks, is far more evident. I will miss knowing that Dr. Sacks’ light is on, somewhere in the world, and am grateful for how he shed it on Sophie and me.

Saturday, August 29, 2015

How We Know One Another



The above photographed birthday cards were my two favorite that I received -- from friends who've known me for a very long time and from a friend who has known me for only a short time and only virtually but who knows me as well and maybe even more and better than anyone.

This poem appeared on The Writer's Almanac on my birthday. I haven't read much Dorianne Laux, but I couldn't help but think the poem was a sign of sorts -- that we are known by others, that words find us. I ordered a couple of her books.



Moon in the Window

I wish I could say I was the kind of child
who watched the moon from her window,
would turn toward it and wonder.
I never wondered. I read. Dark signs
that crawled toward the edge of the page.
It took me years to grow a heart
from paper and glue. All I had
was a flashlight, bright as the moon,
a white hole blazing beneath the sheets.


Dorianne Laux

Friday, August 28, 2015

Alice



 “I never knew I loved you so much,” Alice said to me one night as we pressed our foreheads together, she in her hospice bed and me perched alongside. I felt the same, because it seemed to both of us that the love had been there all along, underlying everything, waiting to be recognized and completely known.

I have read Andrea's blog Go Ask Alice...when she's 94 for as long, I think, as she's been writing it. Alice died a couple of days ago, shortly after her 100th birthday, a landmark that she was determined to reach and did so. I always felt a special connection to Alice because she, too, was the mother of a young woman injured by a vaccination as a baby who grew up with terrible epilepsy and who died as a young adult. That Alice's daughter, Andrea's sister Marla, looked nearly identical to my Sophie in a deep and soulful way, bound me to both of them.

Thank you, Andrea, for sharing your mother with us, for sharing yourself, too. The world is richer for having her in it and sad to lose her, however long her life. I send you love and gratitude for the great gifts you've given us and to Alice the same for giving us you.

Waning with Boys


Last night, between bites of Mirabel Plum Ice Cream and White Peach frozen yogurt with whipped cream and toasted almond crunch topping, I had the brilliant idea to begin taping my sons' constant, enervating* fights. I hoped that it might inspire them to desist, to maybe start talking about poets they love, scenes from Fellini movies or Bob Dylan lyrics. 

They fought about what the series would be called.


video










* The word enervating has always intrigued me. It's always sounded like it should suggest excitement or restlessness, maybe not exactly energizing, but something similar. It actually means causing one to feel drained and lacking in energy. Waxing is another intriguing word to me, only as significant in relation to its opposite: waning. In any case, the boys would certainly not enjoy discussing this sort of thing with me -- the curiosity of great words -- but are rather inclined to spewing simple insults at one another, the occasional death wish and punch.

Thursday, August 27, 2015

52 and Hot (not THAT way)



So far, I've had a lovely birthday. I had an early breakfast with my astral twin Debra (we have same exact birthday) and then a little later breakfast with my oldest friend Moye. I've received texts and telephone calls and Facebook greetings. We are waiting until 5:30 when The Air-Conditioner Man comes and replaces our air-conditioner with a brand-spanking new one. I am hoping that he gives it to us, out of pity for it being my birthday and 95 degrees in the house and all. If there's anything I've learned in my 52 years of life on the planet, all you have to do is ask and ye shall receive. In the meantime, the boys have built what you see above -- a sort of hacked air-conditioner that my friend Mary Beth directed me to the other night on Youtube. It kind of works. That's a cooler filled with ice, with holes cut into it for an insulation tube (the silver thing) and a fan. The video claimed it cost $8 to make, but we spent closer to $17. It blows surprisingly cool air, and I guess it's as good a day as any to remember the days of my youth, nearly thirty-five years ago or so when I lived in a dorm at UNC with no air-conditioning. Since we started school in mid-August, I spent my birthday there for four years, and the dog days of summer in North Carolina were brutal. We would take a cold shower, soak the towel in cold water and wrap our heads, then sit in front of the window fan to cool off. We've put the hacked AC in Sophie's room since seizures and heat are no good. I am waiting for her bus to get here and then will move out of the way and plant her in front of it. in the meantime, I'm reminiscing about some of the best years of my life and those left to come. Thank you for helping me to celebrate!

Wednesday, August 26, 2015

Brainless and Just About 52




I've got some whiney first world problems that include a broken air-conditioner. We're moving into one of those godawful late summer, early fall heatwaves here in southern California, and our old air-conditioner finally broke. The new AC unti can't be installed until later this week. It's about 85 degrees in the house, so I sat outside in my car, listened to NPR and then watched a great video about cannabis that the Tearful Dishwasher sent my way.



I don't know if it's the heat or just the whole clusterfuck, but the ongoing contemplation of this cannabis thing makes tears prick my eyes. So does the campaign of Donald Trump.

When I was young and in college, I went through a rather insufferable period (at least to my parents) when my eyes were seemingly "opened" to the rest of the world. I had grown up in a relatively conservative and definitely Republican household, went to a southern prep school with its fair share of Bible beaters and Young Lifers (the evangelical, feel-good group that made my skin crawl even then before I could ably articulate why) and just really never openly questioned the conservative status quo, other than to insist to my boyfriend at the time that I was in no way going to be a stay at home mother with no career and lots of kids. The insufferable part came when I started learning about more progressive and liberal values and thrust them upon my parents with all the condescension that people in their late teens and early twenties who've never had to do a single, damn thing on their own tend to do. And I know this is still going on, because I hear it from my friends with college-aged kids who come back from their first years away, militant about language and pronoun use and rape culture and on and on. When you're 50 years old and being lectured by a person in their early twenties, even if they're of a different race or nationality or sex or sexual proclivity -- well -- it's boring, to say the least. I know for a fact that my own parents were more worried that I was some sort of communist living in their midst than a drug user, for example, and I imagine to this day they rue sending me to a very liberal university that if not created a liberal me, at the very least, uncovered it.

I was thinking today, in the driveway, about those days and about that statement my mother attributed to Winston Churchill. It goes something like, If you're twenty and a conservative, you don't have a heart. If you're 50 and not a conservative, you don't have a brain. I'll be 52 years old tomorrow, and apparently, I haven't a brain. I am sick to death of everything conservative -- especially the status quo around medicine, pharmaceuticals, government and anything that claims authority. I'm in one of those Fuck It All Let's Get The Heck Out of Dodge Plant Our Own Cannabis And Make Our Own Medicine kind of moods.

Or maybe I just have heatstroke.



Tuesday, August 25, 2015

How We Do It: Part LIV



No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

Monday, August 24, 2015

Rejuvenation



Yesterday I read the most amazing article in the London Review of Books (a somewhat ponderous publication that I get and dutifully flip through) titled A Lazarus Beside Me by a fly-waisted woman (seen above) named Avies Platt. The piece was dated November, 1946 but chronicled events from 1937 and was only discovered recently in a carrier bag full of "diary entries and other bits and bobs." The article was fantastic -- and immensely pleasing to me -- because it's about an encounter between this Avies Platt woman and the great Irish poet, W.B. Yeats.  First of all, did you know that in the early part of the twentieth century, an Austrian physiologist developed an operation for what was known as "rejuvenation?" Meant for aging men, the operation (which was basically a vasectomy) purported to give men a "second puberty," making them virile again. Sigmund Freud had the operation (good Lord), as did Yeats. What is there to say about this and why did I not know about it, even as I read nearly every single poem that Yeats wrote and particularly love some of those crazy ones he wrote in his latter years? I'd throw up my hands and say Men!, but you know I would have been all over Yeats if he'd so much as crooked his finger at me.




A Drinking Song

Wine comes in at the mouth
And love comes in at the eye;
That’s all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh.

W. B. Yeats

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