Monday, October 12, 2015
Haysoos, Maria and Josef!
I'm having the old homestead painted for the first time since we moved in nearly fourteen years ago. Those are only some of the books that I had to pull down from only some of the shelves. Oliver told me that I had too many, and Henry reached up for the ones on the tallest shelves and wondered if I'd read any of them lately. Probably not, I told him. But they are who I am. I could give a flying foo-foo about that Mondo Londo woman who tells you to get rid of everything unless you can say that it brings you joy. The little French paperbacks of Balzac and Sartre and Rimbaud brought me nothing but agita when I read them thirty years ago, but when I run my fingers down the yellow pages and bury my nose, I remember Dey Hall and how hot it was in the fall without air-conditioning, how insane Dr. Daniel, with his American South French accent, pounded on the table and shouted OUI, OUI, OUI, HELL OUI! if we answered a question correctly, and how hard Sarah and I laughed when we quizzed one another on idiomatic expressions -- all 350 of them -- useless then and now. Il n'y a pas un chat dans la rue! we'd repeat, over and over, downing our Tabs and Mello Yellos, Sarah's curls riotous and as disheveled as her backpack whose contents slipped out and left a trail wherever she walked. I read La Nausee while swinging on a hammock on the rickety porch of a house we called The Shanty where I lived with my friends Missy, Hilary and Julia during my junior year. I felt literally nauseous while I read, the first time the body met the mind and one recognized the other and the exhilarating freedom of being alive. I'd meet my boyfriend Luke under the trees whose arching boughs had convinced me to give up my spot at the University of Virginia -- I loved the UNC campus, not the UVA grounds, loved the brick of Dey Hall, not the formal colonial architecture of Jefferson -- and we'd lie there on the grass in the quad, reading Auden and Williams and Yeats, Li Po and Tu Fu. They are who I am.
Cast my memory back there Lord, sometimes I'm overcome.
Sunday, October 11, 2015
I stopped by my friend Craig's house today to check out his xeriscaping (that sounds sort of obscene or personal, but for those of you who live in areas of the world where it rains more than once every four years or so, it's what we do to cope with drought) and also had the pleasure of seeing his friend Tom. You might remember some years back when I wrote about Tom and his husband Ed whose 80th birthday party I had the privilege of attending and providing the cake. Tom and Ed have been together for well over forty years and listening to their stories about growing up gay in the thirties and forties of the last century, as well as being a couple in this one, were sobering, hilarious and fascinating. Both are the dearest and warmest of men, and it's such a privilege to run into either of them, even if was about 110 degrees outside. Today I had Sophie in the car, and when Tom walked up to it, I introduced him to Sophie. He said, Hi, Sophie! and I quickly told him that she wasn't able to talk but that she understood him. Tom said, just as quickly, Well, we have enough talkers on this earth, so that's just fine!
Then the skies opened up with rain, cleansed my soul, and plumped up my heart so that I jumped out of the car and pledged my eternal troth to Tom for being such a beautiful, inclusive man. Just kidding on the rain part. I would have planted a giant kiss on his lips if my own weren't so damn dry. I did admire Craig's xeriscaping, though, and shed a bit of rain on my own when I drove away. I've said it before, dear Reader: sometimes it IS the small things that can make or break you.
* Things People Say is a device I use throughout my book in progress, but they're generally stories of more outlandish things people say when faced with Sophie's disability. It's been my experience that the sort of comment that Tom made is a rare exception to the rule.
Saturday, October 10, 2015
Pray for Peace
Pray to whomever you kneel down to:
Jesus nailed to his wooden or plastic cross,
his suffering face bent to kiss you,
Buddha still under the bo tree in scorching heat,
Adonai, Allah. Raise your arms to Mary
that she may lay her palm on our brows,
to Shekinah, Queen of Heaven and Earth,
to Inanna in her stripped descent.
Then pray to the bus driver who takes you to work.
On the bus, pray for everyone riding that bus,
for everyone riding buses all over the world.
Drop some silver and pray.
Waiting in line for the movies, for the ATM,
for your latte and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.
To Hawk or Wolf, or the Great Whale, pray.
Bow down to terriers and shepherds and Siamese cats.
Fields of artichokes and elegant strawberries.
Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.
Making love, of course, is already prayer.
Skin, and open mouths worshiping that skin,
the fragile cases we are poured into.
If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.
When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheelchair, each revolution
of the wheels a prayer as the earth revolves:
less harm, less harm, less harm.
And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail,
or delivering soda or drawing good blood
into rubber-capped vials, twirling pizzas --
With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.
Pull weeds for peace, turn over in your sleep for peace,
feed the birds, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.
Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your Visa card. Scoop your holy water
from the gutter. Gnaw your crust.
Mumble along like a crazy person, stumbling
your prayer through the streets.
Friday, October 9, 2015
So, two college shootings today already. Maybe as we plan for Henry's college, we should boycott those schools that are in states with loose gun restrictions? I read somewhere that a group in Australia was calling for a boycott of tourists to the United States because of our embarrassing servitude to the NRA. Was that real news or something from The Onion?
Of course, I'm under no delusion that it makes much of a difference but it'd be good for the spirit to align oneself with people whose moral choices are similar, who wish the NRA would dry up or all its members come to their senses, buy a nice bit of land in some godforsaken part of a godforsaken state (Texas, maybe?) and set up all the shooting targets and End of Days scenario sets they please. They could start a Re-enactment sort of club like the Renaissance Fair and hunker down in their homes with their guns, waiting for invaders so they can practice protecting their kids. They could even set up camps with fake schools and teachers and principals, have a lockdown and re-enact those drills I've been reading about where kindergartners have to be really, really quiet and pile into their cubbyholes during lockdown drills.
I said on Facebook that from now on I'm going to get all my news from The Onion because it makes me feel sane. Here's what I read today that cracked me up.
Thursday, October 8, 2015
I wish you all could come to next week's Books & Bakes salon. I'm reading Virginia Woolf's To the Lighthouse for perhaps the bazillionth time and discovering that it's even more amazing than it was the last time. It might be one of those books that illuminate your present no matter your past. It does for me. I'll be making what Mrs. Ramsay serves at the dinner party around which the book revolves, but I won't tell you what it is -- honestly, if you want to get into the great woman hive-mind, you should read this novel.
When doors slam, they slam and I jump.
But what have I done with my life? thought Mrs. Ramsay, taking her place at the head of the table, and looking at all the plates making white circles on it. "William, sit by me," she said. "Lily," she said, wearily, "over there." They had that -- Paul Rayley and Minta Doyle -- she, only this -- an infinitely long table and plates and knives. At the far end, was her husband, sitting down, all in a heap, frowning. What at? She did not know. She did not mind. She could not understand how she had ever felt any emotion or affection for him. She had a sense of being past everything, through everything, out of everything, as she helped the soup, as if there was an eddy -- there -- and one could be in it, or one could be out of it, and she was out of it. It's all come to an end, she thought, while they came in one after another, Charles Tansley -- "Sit there, please," she said -- Augustus Carmichael -- and sat down. And meanwhile she waited, passively, for some one to answer her, for something to happen. But this is not a thing, she thought, ladling out soup, that one says.
Wednesday, October 7, 2015
|La Jolla, CA 1996|
The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.
from The Geography of Sorrow: Francis Weller on Navigating Our Losses.*
I finally picked up Sophie's emergency medication from the drugstore today, almost five days after I requested the prescription. I was going to complain to The Earnest Pharmacist about the colossal communication breakdown but decided that I didn't have the energy for it. I'm generally a dog with a bone in these matters, but I also pick my fights with exquisite precision. The drugstore is within walking distance, and the convenience of it weighs more than perpetuating the conflict. I noticed -- with rue -- that my co-pay was only $15 and wondered if I was getting the $.99 Store version. I recalled a time nearly a decade ago when I'd had to purchase it on a weekend, couldn't get insurance approval (back in the days when I stockpiled rectal valium for crazy parties I threw), and paid $1400 for two doses. Apparently, Diastat is a relative bargain these days, so any of you Rectal Valium Party Lovers should stock up. I'll put it on the top shelf of the medicine cabinet in the bathroom where it'll hopefully sit for a few years before expiring.
Sophie appears to have come out the other side of this drastic cut in Vimpat. She's been smiling again, her palms are dry (they get clammy and cold when she has multiple seizures) and aside from some weakness in her right leg (attributed to seizures as well and perhaps Todd's Paresis), we might take another bit away this weekend.
I can say today, though, that since beginning CBD in December of 2013, she has about 90% fewer tonic seizures, 100% fewer myoclonic clusters, takes 65% less Onfi (the benzo) and nearly 75% less Vimpat.
My grief is in the blurring of the boundary between past and present, as is my gratitude. I am stretched large.
*Thanks to my friend Kari for posting this quote on Facebook and inspiring me.
Monday, October 5, 2015
Who cares whether the new toys from Ikea are meant for young children? I felt only a twinge of sadness today when I roamed the aisles and wondered whether Sophie would still like these things. She had something similar years ago, but I had to give them away when her seizures got so bad. I was always afraid that she'd have an atonic drop and slam down into them or otherwise hurt herself. Over a period of about ten or twelve years, Sophie cut her head open at least five times, needing stitches, knocked out a couple of teeth, one permanent, broke a tibia, cracked a wrist, cracked her nose and had countless bruises, black eyes and contusions. It's the little things, the small improvements, that mean the world, and these aren't the things that generally impress the neurologists. That Sophie's seizures have been reduced to where she can safely play with some toys is probably proportionate to our successful CBD story being reduced to anecdote, at least with the neurology community and the ridiculous marijuana naysayers. Hell, the small improvements might not impress those of you who are terrified of disability, who can't imagine either being so or caring for someone and still having a fulfilling life. We live in a culture that often doesn't prize difference, particularly the cognitive kind. How many times have you heard or thought At least I don't need a wheelchair! or I could never handle a child with a disability. I realize that there's a learning curve, and I'm grateful to be at the end of it. I probably would have wanted to kill myself twenty years ago -- well, maybe that's a bit harsh and insensitive -- if I knew I'd be picking out baby toys for my young adult daughter. I'm not sure I would have been able to keep on keeping on, which is probably a testament for all of us, no matter our situations, that living in the present is all we can do. If you pile on some gratitude as you're basking in it, all the better. And if your present isn't so great, be grateful that it's just for now and will pass.
Update on Vimpat Withdrawal: So far so good, although Sophie seems really tired and even depressed. She has a lot of weakness in her right leg and doesn't want to walk on it very much. She isn't having seizures, though, which I will attribute to the emergency THC and CBD. Otherwise, I'd have to blame the Vimpat and then I might really off myself as we kept her on that damn drug for more than seven years.
Sunday, October 4, 2015
That happened this weekend. I sat in front of some fancy cameras while my old college friend, Sophie Sartain, a renowned documentarian, shot a short piece for PBS about caregivers. You might remember Sophie's documentary Mimi and Dona, about Sophie's aunt and grandmother that I wrote about a while back. Click on the title and read a bit about it, watch the clip and then mark your calendar for the PBS showing on November 15th.
The film spotlights the challenges of aging caregivers of people with intellectual and developmental disabilities—some 4.6 million Americans, 75% of whom live at home with family—and details the ripple effects of Dona's disability on three generations of a Texas family.
Can I tell you that while I am most appreciative of a spotlight, particularly when it has to do with advocacy for long-term caregivers of the disabled, I hate the spotlight, the camera and all of the jazz that goes with it. No matter the seriousness of the topic or how well I might articulate my feelings and ideas, a bad picture or one in which I look too -- well -- too, sends me spinning, and I want to run for the hills with poetry. I take these caregiving issues very seriously, but humor me when I ask you to pray to your god that when my little segment appears on the PBS special, I've remembered to hold my chin down, but not too far down, and that my mouth is busy talking, eluding my jowls' resting pose. Because, you know, it's all about me.
That also happened this weekend. I took Oliver and his friend to Malibu. Henry didn't come because he is otherwise always occupied with seventeen year-old activities, and none of these include hanging out with your little brother and your mother. Sophie didn't come because she was having a particularly difficult day dealing with drug withdrawal. She stayed at home and dozed off and on all day with Saint Mirtha. The THC is helping, ya'll, and I think we're through the worst of it. She's not having nearly as many seizures as she had the first four days, and the hives have disappeared as well. Damn that Vimpat and the pharmaceutical clusterfuck it rode in on. During this whole shebang, I tried to get a refill of Sophie's Diastat (an emergency medication of rectal Valium) because her old one had expired (we haven't had to use Diastat in the nearly two years she's been on CBD), but The Powers That Be (namely the insurance company, the federal government, and the pharmacy) couldn't get their crap together, and I'M STILL WAITING FOR THE STUFF. The Earnest Pharmacist Who Just Graduated From Pharmacy School told me over the Consultation Counter very earnestly, It's a controlled substance, ma'am. I'm really sorry. I won't belabor the details -- you've heard it all from me countless times. I found it exquisitely ironic, though, that I am jumping through hoops and making numerous phone calls involving Famous Neurologists at Famous Hospitals, Private Insurers, The Federal Drug Administration, etcetera, etcetera yet haven't made headway to get this refill of a life-saving medication that my daughter possibly needs. Let's not belabor the marijuana part here, either. What if it were a gun dispensary? I imagine I could pick up a military grade weapon and then walk home and order me some ammunition online to protect my family from invaders as we live and work and travel in the big shitty, no problem. My right to do so is protected by The 2nd Amendment. My point is, of course, NOT that we need to lift all regulations and make government (of the people, by the people, for the people) the villain. My point is that there is more difficulty in getting a shitty benzodiazepine prescribed for my daughter's seizures by her physician than there is for me to get a gun and some ammo.
Oh, yeah. Malibu.
It was divine.
Reader, how was your weekend?
Friday, October 2, 2015
to Heather McHugh
Thursday, October 1, 2015
Wednesday, September 30, 2015
I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready. Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young. My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.
Tuesday, September 29, 2015
This morning, I woke up and read about Alex Truesdell, a recipient of a MacArthur Genius Award. She is described as
a visionary social entrepreneur who creates low-tech, affordable tools and furniture that enable children with disabilities to participate actively in their homes, schools, and communities. Truesdell challenges our assumption that disabilities are fixed and instead suggests that limitations can be minimized, or even eliminated, with effective user-inspired adaptations—the kind she creates as founder and director of the nonprofit Adaptive Design Association (ADA).
You can read more about her here. If you need a good, cleansing cry about something beautiful, watch the video.
The Universe is abundant, and there is much for which to be grateful. Thank you, Alex, for the work that you're doing.
Monday, September 28, 2015
If I were French, I might call our current situation with Sophie -- the hives, the CBD, the THC, the Vimpat and the Onfi -- LA SIT U AH SEE ON. There's something about the supercilious accent that helps me cut through the fear and cope. Writing it down here also helps me to impose some order, however illusionary or delusionary because, let's face it, after twenty years, the main thing I know is that refractory epilepsy is a big, dark hole and no one, absolutely no one, knows what the hell is going on.*
I had a conversation with The Neurologist this afternoon about Sophie's hives, and she suggested that I cut Sophie's dose of Vimpat in half. My initial response is Whoa. Any of you regular readers know that weaning anti-epileptic drugs, like weaning drugs for depression or anxiety, is serious business, and that the slower you do it, the better. I also carry around a veritable salt lick when it comes to neurologists' opinions and directives about drugs -- the titration schedules, the weaning schedules and the side effects. It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects. That being said, I see the hives, I have the tiniest gut feeling that they might be related to the Vimpat, and therefore, the Vimpat must go. I really like and respect The Neurologist, and she made the call. That being said, what if it isn't the Vimpat? Ripping off the Vimpat quickly will inevitably cause some withdrawal, including increased seizures and discomfort, but not taking it away could cause some serious shit. I've gotten good advice today from my comrades in seizurology and from my dearest friends. Christy of Calvin's Story (if you haven't read her writing, yet, you need to), said the most profound thing to me after she'd listened to LA SIT U AH SEE ON.
She told me that she has learned to never make a decision based on fear.
We chewed on that for some minutes, laughing at times over the impossibility of it all, how if we really sat down and thought about it, we'd have some kind of fear over all this shit we've faced and continue to face raising our children. We also acknowledged how our gut feelings are generally right -- maybe not even generally, but always. The trouble comes when you don't have a real gut feeling or it's occluded by -- yes -- fear.
So, here's the thing. I'm plain afraid of weaning Vimpat so quickly. I'm afraid that Sophie will go into status or will go insane. I'm afraid not to wean Vimpat because of the possibility of a serious allergic reaction or something brewing. While Vimpat has never really helped her, she's been on it for over seven years, so I'm banking on its relative uselessness as a seizure medicine as far as taking her off it. I have THC and CBD to help during withdrawal, and I have Diastat in the cupboard (currently expired because we haven't had to use it once in the nearly two years she's been on CBD) if there's a real emergency. On the plus side, we were going to wean Vimpat eventually, as soon as we had finished the Onfi wean.
When I lay out my fears and allow my gut to breathe, I think the Vimpat has to go. LA SIT U AH SEE On calls for it.
*If you have any ideas about what's going on or have a SIT U AH SEE ON of your own to share, please feel free to do so in the comments, especially if you're acquainted with epilepsy and drugs. I'm all ears -- fear and ears.
Saturday, September 26, 2015
I periodically use the cue words: Mrs. Braddock's laugh. That iconic scene from The Graduate includes the most maniacal, fabulous laugh ever uttered by a character or an actor with the possible exception of a Jack Nicholson sneer from one of his iconic roles. The laugh is something that I call upon during difficult or absurd situations, most of which happen during my interfaces with the Systems of Care around Sophie's epilepsy. Even if I am the model of restraint, calm and cool, on the inside, I'm throwing my head back and screaming the scream of the absurd.
Watch the whole clip, because the last two lines of it are also pretty damn fabulous.
Ben, this whole idea sounds pretty half-baked.
No, it's not. It's completely baked. It's a decision I've made.