Wednesday, January 25, 2017
Super Human Resistance
The only person in these parts who is super human is Sophie. She's basically arisen from a fast-declining, near-comatose state that lasted for a good six weeks or so. I think that I, along with The Powers That Be In Neurologyland, had a hand in her demise when we raised her benzodiazepine Onfi by about four times. I think she was profoundly over-medicated. As I've mentioned before, CBD can raise the levels of Onfi, so once I'd decided that she was over-medicated (with the help of her father and Dr. Bonni Goldstein, cannabis doctor extraordinaire) and lowered said medication, she began to emerge. I also brought her back to Dr. Joy Jin (Chinese doctor extraordinaire) who is giving her Chinese herbs and The Osteopath who is treating her overall well-being with regular visits. A week or so ago I also had an amazing experience with Sophie in my home which so blew my mind that I am hard put to talk, much less write about it. It was a "sound bath," and I know by even typing that out, I am going to sound like a crazy lady from LaLa land. Trust me. I don't do drugs, but I imagine what we experienced was similar in intensity and beauty without the side effects.
So, yes, arisen. Sophie has arisen like some kind of secular Lazarus.
Yesterday, we went to the dentist, a trip that I loathe, probably, more than any other aspect of caregiving. Sophie actually stayed still with only minimal restraint, opened and closed her mouth on command with a bit of cueing, and the new dentist talked to her the entire time she worked. She works with adults with disabilities and has trained to do so at UCLA, is probably about fourteen years old but is an angel, a true angel. She even made a little tool out of six or seven tongue depressors wrapped in gauze that she used to prop Sophie's mouth open. The usual tool is this metal clamp thing that resembles some kind of nineteenth century gynecological device and is so uncomfortable that Sophie generally thrashes and screams when it's placed in her mouth. The tongue depressor contraption worked perfectly because Sophie likes to bite on things, and she could do so even as the dentist worked on cleaning her teeth.
Again, arisen. Sophie has arisen like some kind of secular Lazarus. With help.
The other thing I wanted to say here is that I wake up every morning in a state of dread. I know ya'll do, too, and I know most of you want to not only resist the clusterfuck that is our current government but stay alive while doing so. This morning as I did my usual morning things, I thought about being in it for the long haul. I realized that I've been in it for the long haul as a caregiver. I've watched my child seize tens of thousands of times, an experience that some people have only once if at all. It never gets easier, but I'm still here. Sophie, despite having tens of thousands of seizures, is still here. I'm taking cues from Sophie. She's a resister. I can be a resister. You can be one, too.
In addition to caregiving and seizures, though, or despite it and them, is a life filled with family and friendships and reading literature and poetry. There's making love and writing and laughing and drinking and eating good food. There's going to the movies and bird-watching. There's taking care of my garden and beautiful house. There's meditating and thinking and allowing my rich imagination to flourish. In between having seizures and convalescing for Sophie there's music and walking outside, there's looking up at trees and out to the horizon at the edge of the ocean. There's eating and watching and drinking and swinging and taking baths. There's being held tight by brothers and a mother and a father. There are things to chew on and mermaids. There's a purple room.
What's my point? We can't keep up this resistance without help and without acknowledging the other parts of our lives. I read an article today that I thought I'd share here. It's called How To #StayOutraged Without Losing Your Mind by Mirah Curzer. Thank you, Mirah! One suggestion , among several, is that we pick one or two things to concentrate on. I'm picking healthcare and disability-related issues,particularly for the disadvantaged and minorities.
What are y'all going to do?