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?
I can't even get started on the gun thing (mostly because I already have in so many other places and I'm tired of it). Can't wait for the documentary to air, if only because it means I get to "see" you again. I'm thrilled that the seizures are abating a bit - I'm telling you, just my tiny experience with withdrawal symptoms from Cymbalta is enough to make me want to curl into a ball for Sophie. As for my weekend, Bubba is in some exotic, faraway country working away and I convinced the girls to join me for brunch and a stroll through Pike Street Market and the Seattle Art Museum this morning. While their typical teenage weekend activities don't include their mother, I'm certain that the promise of brunch and visiting the exhibit done by a new friend at the museum were enough to be the tipping point. Eve exclaimed, "I can't believe we know this artist!" when we saw her work. Pretty funny.
ReplyDeleteI do not like having my picture taken. Every time it is a, "Dear God is that how I look?" sigh
ReplyDeleteOh Birdie, I had that experience at Disneyland! I found myself thinking, "Oh wow, so THAT is what becoming a mother does..." along with my ever present defensive blubber ;)
ReplyDeleteOH! What I meant to type first was, "Mimi and Dona" looks very interesting, I'm going to try to see it! Glad you and your college friend can do good work together :)
ReplyDeleteExciting about the documentary! We'll try to get it here, although the last time I checked we couldn't watch PBS content online because of "rights issues." (Whatever that means. Money, certainly.) If it's any consolation, you look great in the photo, and people will be paying too much attention to what you're saying to notice your chin position, I am certain.
ReplyDeleteAnd yes, the drugs/guns contrast IS absurd. Why aren't lawmakers out there fighting to guarantee everyone unhindered access to necessary medications, rather than Rugers and Colt 45s? (Or whatever modern gun brands are. I don't even know.)
Oh, Elizabeth! You are so simply amazing! You absolutely knock my socks off every day.
ReplyDeleteI will definitely watch the documentary. Of course!
And I am so glad to hear that the worst of the withdrawal may be coming to a close.
It is ridiculous that you have to wait to get that drug. The absolute ironic absurdity of our gun laws compared to our drug regulations is beyond imagination.
good to read about the documentary, Sophie doing a little better, and Malibu! the drug wait? unthinkable - if you depended on it, you'd have to take Sophie to ER to get treated, and I can't imagine how that would save any money or paperwork to the powers that be.
ReplyDeleteThis post is just so brilliant, and also so sad. How in the world did we get here? It makes no sense at all.
ReplyDeleteAnd how could Henry be 17 already! Morning to you, dear friend.
oh, a day at the beach, just what the doctor (ha!) ordered. And, yes, I've thought about how much easier it is to get a gun than healthcare, abortions, and low cost housing! I'm ranting on the gun thing today -- I'm really super pissed off.
ReplyDeleteHope Sophie continues to improve, and I look forward to the documentary! I don't know if we ever feel satisfied with our on screen appearance. I just like to remind myself that in 20 years I'm going to look back at the present and say, "Wow, I was a good looking woman!"