Where is Jesus?

I haven't written in this space in more than a week, and the last thing I wrote was just fluff, just superficial bullshit, just aggravating minor bad luck goofy stuff that's a mask, all resolved now. I'm walking around doing laundry, taking care of Sophie, exchanging texts with my favorite sacrilegious caregiver friend, feeling solidarity and shedding tears with and for another caregiver friend, Christy Shake, whose most recent post might have ripped my heart out of my body but instead provoked its beating a little harder a little faster. We are ALIVE. I love you, Christy. Who is Calvin and who is Sophie?Who are we without these cares? Must we define ourselves by care? Who are we at all?

Where is Jesus?

Shouldn't he have shown up by now and cleared the tables in Washington, D.C., kicked them over and thrown those who claim to believe in him out on their privileged, hypocritical, stupid, vision-less asses? Shouldn't that POSPOTUS be punished by now, disgraced and bound in a public stockade?  Why is that man from Georgia so hell-bent on power that he's denying suffrage to tens of thousands of people? Is he afraid of the black woman that he is running against? Why are Georgians not ashamed? Are they punch (or should I say beer) drunk on power? I am ashamed that I pass countless homeless persons on every single corner of this great city. I pass them by. Why have the Koch brothers spent so much money on propaganda against climate change? What are these sacrosanct values that conservative peoples espouse? Why do so many people bear arms? The man in the park in Sedona last week, pushing his mother in a wheelchair to an overlook, the rushing water below, the sky blue above, a large gun strapped to his thigh. Did he feel safer? Freer? He made me sick. Why exactly is the POSPOTUS administration now going to "erase" transgendered people? Define humanity by their genitals at birth? Who will be next?

Will we have to fight? Parents against their grown children. Cousins estranged. Friendships severed. And anger, so much anger, and it won't be squelched.

No stranger to the catastrophizing that comes with great stress (I step over a curb and imagine my body flung by passing traffic, the descent into the red rock canyon surely must be swift), I am yet dazed, struck dumb, bewildered.

I am furious.

“I have been beaten, my skull fractured, and arrested more than forty times so that each and every person has the right to register and vote. Friends of mine gave their lives. Do your part. Get out there and vote like you’ve never voted before.”

—Congressman John Lewis

Hitting Jesus

Street Art
Los Angeles

I almost hit Jesus today. Of course at first he came as a Man. I mean -- I didn't know he was Jesus or think he was Jesus. He was a man riding a beat-up bike on La Cienega, and I was driving my car toward a sick friend's house near the airport. I was bringing her a pastrami sandwich and some french fries, planned to stop and get a grape soda. He had long black curly hair and brown skin. He didn't have a shirt on and his pants were dirty and rolled up, but I think that was so they didn't get caught in the spokes. He darted out in front of my car and it seemed purposeful, not like a death wish but more to get my attention. There are days on the streets in Los Angeles where it seems like you narrowly miss death more times than twice (because haven't we all narrowly missed death at least once?), and today was one of those days. You've got to really concentrate when you drive in Los Angeles, but you can also daydream, and it's easy to get complacent when the cars are backed up and you're moving forward by inches. It's a little like going to mass, when you're kneeling and sitting and standing and saying the prayers but you're also thinking about what you're going to eat when you get home or whether you'd rather be the saint that defied everyone and was burned as a witch or the one who carried Jesus' cross on her back up the hill. Escaping death would include nearly killing someone else accidentally as well, because let's face it. Life as you knew it would be over if you accidentally hit someone with your car. I jammed my brakes and looked straight at him, a curse on my lips, but then he looked at me with his dark brown eyes and I knew it was him. Jesus. I'm not religious, you know. I don't even believe in God the Creator. I say I believe in Love, but that sometimes seems forced. As a Catholic child, I was certain that Jesus would come back dressed like a beggar and fool everyone, but I also fantasized about living in an orphanage on cold English moors, so I'm not reliable that way. This all happened in an instant -- the man on the bike, me slamming the brakes, a curse on my lips that was really Jesus! and it was him. A psychic hit, is what I call it. Because why the hell would I have thought the man was Jesus if he wasn't? Isn't that the way he's coming again? Or is he just out there, biking around with no shirt, his pants rolled up to avoid accidents, making eye contact with the needy.

In this crazy world, it's good to know that there are still people who

believe they will bring the needy to Jesus, even on Hollywood Blvd in the middle of a 90 degree afternoon.



Hold fast to dreams
For if dreams die,
Life is a broken-winged bird,
That cannot fly.

Langston Hughes

Bill Clinton called me today

dedicated to my good friend Mary Beth

So far, I've had a very productive day with some really good possible employment leads. I'd be tempted to say that Jesus was involved (especially after that chain email from last night), it was so positive, but unless Sophie spontaneously stops having seizures at some point today, I'm going to attribute my progress to luck and a bit of perseverance rather than the mysterious workings of the Lord. What actually made me the most excited, though, were two things. I discovered an old Tiffany's merchandise credit that was too small for anything Tiffanyish but large enough for a pair of pretty earrings that I ordered online and that will come in a Tiffany box which is really what I like best, anyway. I figure it's a Mother's Day gift for myself. Ahem. The other great thing is that Bill Clinton called me on the land line today. I picked up the phone and when he said, Hi, there. It's Bill Clinton, I felt that old faint, shuddery feeling. I clicked off my computer and settled down to talk. That man can talk. His breath traveled through the wire and right into my ear, and while he talked the whole time about another woman, some woman who is running for mayor in Los Angeles, I was just happy that he'd call at all. Good golly, Miss Molly, as those of us who keep the man a special place in our hearts, say. Good golly, Miss Molly.

The Jesus, Weed and Politics Post

Yes, that picture above is titled Pharmacist Jesus, and the link was provided by one of my readers, a woman who can not only write like a whirling dervish but struggles herself with epilepsy. She sent me the photo when I declared that I wouldn't try another drug for Sophie unless Jesus himself offered it to me.

Which brings me to the weed part of the post. I forgot about the weed possibility!  I honestly forgot about this, a post that I wrote barely a month ago and that got me all excited! What is wrong with me? Thank you for reminding me. Next week, I'm going knocking on a couple of medical marijuana doors in the neighborhood that come highly recommended. I imagine that I will be weaning Sophie off of either the Vimpat or the clobazam and simultaneously starting her on a regimen of brownies or cookies. Think of the money I'll save if I wean the clobazam first ($500 a month). However, my dream of traveling to Vancouver as a drug mule for a pick-up of the clobazam and then a rendez-vous with a stranger in a hotel room will go unfulfilled -- the sacrifices we make for our kids. Honestly.

Which leads me to politics. A friend of mine in the special needs world announced on Facebook that she has finally decided and is voting for Romney, and me being me, I got engaged. All was civilized, and I'm done trying to convince her otherwise, but just when I felt really depressed by her arguments about unemployment and the economy and how Obama should have fixed it by now, etc., I read Eric's post on Pressure Support and felt uplifted and edified and awed by his persistence and good, clean arguments. Yes, I know I'm a choir -- but no matter -- at least I know that if Romney wins, there are plenty of people out there with whom I will band, a community that truly believes in community and our connections to one another.

It must sound, sometimes, that the experience of raising Sophie, seeing her seize, struggling with the systems of care -- the healthcare system, the education system, the rules and laws protecting the disabled -- even the constant fight, inherent or real, over her dignity as a human being is something that has informed every single bit of my life, including politics. Some might say that disability has circumscribed my beliefs, that I'm a one-noter or beating a dead horse, over and over and over. Others might say (and have done so) that I'm unpatriotic and bitter, but what I think is that these very personal issues have informed and made me even more passionate about real, liberal principles, perhaps even radical ones. Can you even imagine what direction I'd take if Sophie's seizures stopped with medical marijuana?

Now, I'm going to smoke some weed.

(just kidding. I haven't smoked in probably thirty years. I get extremely anti-social when I smoke the stuff -- and bored out of my mind.)

Drug mule, mewling and Jesus

So, it seems like it's that time again. Given that Sophie is having up to three big tonic-clonic seizures a day, again, and also moans and hums an inordinate amount of time, her drug regimen is suspect. Is it the Vimpat? Is it the Clobazam? I have no idea, although I'm certain that the weaning of one or both will be brutal. I'm trying to have the energy to figure it out and take action but feel slow in the doing, slower than I ever have before. I've made the calls, done the rounds and am thinking of doing the whole alternative thing, again -- the homeopath, the Chinese doctor, the osteopath.

Know any shamans?

These are the drugs that Sophie has been on during the last eighteen years:

ACTH

Prednisone

Mysoline

Nitrazepam

Phenobarbitol

Depakote

Depakene

Klonopin

Clobazam

Zonegran

Lamictal

Vigabatrin

Topamax

Diastat

IvIg (technically not a drug, but a treatment)

Ketogenic Diet (not a drug but a treatment)

Felbatol

Keppra

Banzel

Vimpat

Clobazam

The efficacy of nearly all of them has been questionable; the last two were desperate measures as I'd said that I'd only try a new drug again if Jesus himself offered it. And we all know that Jesus doesn't offer drugs to children who seize.

Reader, if you're as familiar with anti-epileptics as I am, would you wean the Vimpat or the Clobazam first?

Why is it raining?

That's what I'm thinking this morning at 9:56 AM. Rain in late May in southern California is unsettling. The sky is gray and the wind is rustling through the palm fronds. Do you know what that sounds like? There's a carrot cake in the oven, the beds are made and the children are at school. I'm contemplating buying a lawn mower and making my strapping boys mow the lawn from here on out. Just like rain in late May, mowing your own lawn in southern California is an anomaly. Jesus has been doing the yard work (other than gardening) at my bungalow for nearly fifteen years -- Jesus, the gardener, practically part of the family -- probably more a part of the family than that other Jesus. Jesus has a huge business, I'm certain, and it probably won't make much difference if I up and tell him that my two strapping boys will be mowing the lawn from here on out. I'll ask him to come every month or so and do the heavier yard work -- the weed whacking, edging, the hauling of fallen palm fronds. He'll still be doing all the yard work for the big mansions and the people who can't be bothered. I remember doing yard work as a kid growing up in Atlanta. We lived in a big house with an even bigger yard. My father taught my sisters and me to mow the lawn because he had no sons. My sister and I had the mowing down to a system -- The Front Hill, The Side Yard, The Side Side, The Back, The Back Side. My father might  as well have had a whistle and a megaphone given how exacting his standards were for Mowing the Lawn. We had to go carefully around the trees and not miss any spots. We had to let the grass fly out and then rake it up, dump it in a wheelbarrow and then wheel it into the woods behind our house. We begged him to let us bag it, and to this day I don't know why he didn't let us. Sharp shards of southern green would stick to the sweat on your skin and sometimes the motor would die and you'd have to stand there and pull that damn cord over and over to re-start the engine. At one point, mowing the lawn caused me to have allergy attacks, so I got to stop doing it. My sister called them "allergy attacks," and I think she was very resentful. One day, it was snowing lightly in Atlanta in the early winter, an anomaly, just like rain in southern California in late May, and my father made her mow the lawn.  I think she swore as she cranked up the mower and my father grounded her. I wonder what the boys will do when I start making them mow the lawn? I wonder why it's raining? What would Jesus do?

It's a big world

It's a big world. That's my mantra of choice sometimes, particularly when I see billboards like the one above all over town. That sort of thing usually doesn't show up in the streets of Los Angeles, aside from the random corner of Wilshire Blvd. with dull-eyed picketers calling out to the flip-flops that God is coming to wreak revenge on your sinful soul. I crossed Wilshire Blvd. one afternoon with my son Oliver who wondered why and what these people were talking about. They look hungry to me, is all I said to my son. I don't think they really know what they're talking about. I used to ride the bus to work in New York City from the Upper West Side through Times Square and on to Grand Central where I was the assistant pastry chef at a giant hotel. There was a man standing on a crate for what seemed like years in Times Square (before the Disneyification of the area), and he shouted about the lord and Jesus so loudly that you could hear it through the bus windows, over the honking horns. It's a big world, is what I thought, and I thought that, too, when I read about people who like to dress up like stuffed animals and hold conventions and walk around in their costumes and call themselves Plushies. I attended a healthcare conference once in Orlando and had lunch in a hotel that was hosting an international Plushie convention, so I know what I'm talking about. It's a big world, and you can't make that shit up. If Jesus is coming on May 21st, I hope he deals with stuff like THIS in Florida but somehow I don't think he will. It's a big world.

Awesome poster making the viral rounds