Care-giving, Drugs and Guns: Part 4,590,234

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.

Anyhoo.

Oh, yeah. Malibu.

It was divine.

Reader, how was your weekend?

Medical Marijuana, CBD Update, Realm of Caring, Weedmaps TV and Vanity

Last month, right near the 19th anniversary of Sophie's diagnosis of infantile spasms, I had the great opportunity to tell our story to a crowd of folks at the Realm of Caring fundraiser. Here's a video which features some clips from my own speech but also from some of the other families, as well as the phenomenal Dr. Bonnie Goldstein who is working with many of these children with refractory epilepsy, as well as other illnesses. She explains the whole shebang in the clearest, most professional way. Please listen to the whole thing -- it will be thirteen minutes of your day well spent.




The video was made by Weedmaps TV -- I know, I know. The name. Get over your hang-ups, folks, and embrace it. If you hold-outs do that, I'll get over my hang-ups about being photographed at angles I'd prefer to never see. I took the first step by even posting this thing. You take the next. My vanity for your ignorance.

As for our Sophalofa, she is struggling a bit as we adjust both the CBD, THCa and her regular anti-epileptic medications. Overall, she's excellent. Breakthrough seizures are perhaps more difficult to deal with as we've now seen so many seizure free days! As Henry said the other day when I lamented how hard it is: Mom! Think about how many seizures Sophie had every single day for so long! We haven't picked her up off the kitchen floor in months!

When I Don't Love Los Angeles

I was just drinking some coffee (it was bitter) and eating an English muffin with egg white and turkey bacon (it was kind of gross, really), waiting for my morning movie to start (you'll get the three-line review tomorrow) when the woman pictured above walked in. She was Swedish, and she wasn't young. I'm not sure whether she was a Sikh practicing Kundalini yoga, getting ready to jazzercise or was just out for a cup of coffee on a Friday morning in Los Angeles, but this is the sort of stuff that makes me not enjoy the life here. I simultaneously feel superior and intensely inferior. I think Why? when I look at her, head to toe, and then I think God. I wish I were a thin, tall blonde Swedish woman with a smile on my face. I feel old this afternoon, bitter like my coffee and missing New York City where my dark hair, black tee-shirt and careworn visage might be appreciated. Better yet, I bet I'd be a goddess in Cosenza, my ancestral home in southern Italy.

Reader, what's happening in your parts (not pants)?

Close-up blow-out

So, when you read this I will be on a plane, heading to the other coast. I'm making a presentation on Monday morning for My Job. I got a haircut yesterday from a guy who's no bigger than my right thigh. He might have been about seven years old, too. He showed me a photo of his family -- a beautiful Filipino one -- and he pointed out his mama and told me that he'd made her beautiful. She was beautiful and about as big as my left thigh. She was probably about as old as me, too. When I get my hair cut, I steal glances in the mirror every now and then and feel nearly horrified. There's something about the wet hair slicked back, the creases by my nose and the chin, oh, the chin! I can't look away fast enough, and I might even hum as I  do. I can't even shift my head to make the chin disappear because I might mess him up, and I imagine what would happen if I just stuck my tongue out at myself. The no bigger than my right thigh hairdresser asked me whether I wanted my hair blown out, and I said, OK, sure. I felt different when I saw what he'd done -- I'm not a blow-out kind of woman -- and when the boys and The Husband saw me, they thought it looked good. I swear Sophie looked at me differently, but I can't be sure. A few people that I saw at Oliver's basketball game and Henry's lacrosse game exclaimed that I looked glamorous, that they loved my hair, what had I done, where was I going? Earlier, when I had asked the hairdresser what type blow-dryer I should buy as I don't own one and generally go au naturel, he told me that it wasn't the blow-dryer but the technique that mattered, which basically means this is the last time my hair will look like this because I can't be bothered to do what it takes, at least until I go see him next time. I thought ya'll should see it before I go back au naturel and let go, let God, let myself go.

Oh, Yosemite: Part Two

I bet a lot of you are feeling overwhelmed cleaning up all the Christmas crap. I've restricted myself to two rooms in my house -- my bedroom and the kitchen -- because I can't face it. I'm still in my pajamas, trying to do some work for my jobs and the mounds of laundry that I wrote of yesterday. I've also spent an inordinate amount of time figuring out my new camera and how to download the two hundred photos that I took in Yosemite. This whole digital thing is nuts. So much for bourgeois complaints, though -- here are a few more photos that will, at the very least, amuse you and might, at most, distract you from the interminable undecorating chores:

Let me tell you a little story about a sled run that I took, deep in the woods of Yosemite, in a beautiful place called

I grew up, until I was ten years old, in New Jersey, and I lived much of my life on the east coast and am therefore well acquainted with winter clothing and winter "sports," like sledding. When the boys pleaded with me to go sledding, I acquiesed, lowered my large, ancient LL Bean-clad ugly winter coated body onto a small, round black saucer and began sliding, picking up speed and spinning and screaming, feeling the cold wind in my face and my boys' hoots and hollers in my ears. Such was my speed, though, and lack of skill, that I slid right into a hole where I embraced a lovely little pine.

Henry and Oliver ran over to check on whether I was alive, and I looked up and shouted at them, through my hysterical laughter, Go get the camera from Cara! Go get it and take my picture! You know you're aged or quickly aging when you can slide into a small hole on an even smaller black saucer and find humor.

I can't remember the last time I laughed so hard. The saucer was wedged underneath my bottom, so I didn't even get that wet.

Henry, laughing nearly as hard as I, acted chivalrous and attempted to haul me out of the hole.

Oliver mocked me.

When I finally hauled myself up and out of the hole, my dignity and self-esteem shattered, my laughter nearly maniacal, I grabbed the camera from Henry and started figuring out how I was going to tell the story on my blog. As for Oliver, I took his furry head in my gloved hands and pushed it into the icy snow.

Just kidding.

Now go finish taking down the Christmas crap in your house.

This is not a Christmas post but rather about age and, specifically, hips.

Here's a recent photo of me. Forgive the camera -- I've never figured out how to take a picture of myself without it being there. When I take photos of myself now, as I near the half-century mark (I have until August 27th), it's usually on a dare. I imagine I have thousands and thousands of photos of my children and The Husband and probably only twenty or so of me. This is not because I am generally the photographer in the family but more purposeful -- I am vain, and it's the stuff of bourgeois nightmares. I am thinking about a photographic essay, though, titled Self-Portraits in a Barbie Bathroom with a Black Camera:

No full body shots, yet. After listening to Lucille Clifton recite her homage to hips, though, I'm tempted. I found the video via this wonderful website.




Reader, in keeping with my other interactive posts this week, to what body part do you pay homage?

Laugh out loud, redux, with Ecclesiastes

I stumbled upon this post last night that I wrote nearly two years ago. I laughed out loud -- I'll admit to it being pretty damn funny -- but also because it lends weight to a couple of phrases from my favorite book of the Bible, Ecclesiastes:

Vanity of vanities! All is vanity.

That which has been done is that which will be done. So there is nothing new under the sun.

I'm still kvetching about seizures and stress, and I'm still bemoaning my weight and age. That one is more important than the other is beside the point.

All things are wearisome; Man is not able to tell it. The eye is not satisfied with seeing, nor is the ear filled with hearing.

I got my hair cut yesterday, and when I asked Henry to take my picture, he told me that I had to promise to actually post it. Here I am, vain as hell, looking for someone to photo-shop one inch off the sides of my face and restore the cheekbones that lie underneath. An upper lip would help, too, but leave the eyebrows.

In lieu of your kind comments and protestations of my "beauty" -- I know ya'll -- I'm going to ask you to regale me with stories of your own vanity. Let's have fun.

And I set my mind to know wisdom and folly; I realized that this, also, is striving after wind.Because in much wisdom there is much grief, and increasing knowledge results in increasing pain.