Friday, August 24, 2018
Everything Connects Us to Everything Else
so said Leonardo da Vinci, and he wasn’t kidding.
The Neurologist called last night, after I’d posted (scroll down for yesterday’s post) and confirmed what I’d suspected, that Sophie is having another occurrence of ESES. My instincts were correct, I was right, Sophie’s “decline” is due to that and she will be treated with Intravenous Immunoglobulin — infusions — and hopefully it will be resolved. The Neurologist was sorry, and I am not angry with him at this point. Yes, he should have read the report two months ago, so Sophie could get treated. All of it, every single bit of it, is emblematic of — well — everything in our world from diagnosis to medical education to our notions of what it means to be human to the commodification of healthcare to inequality to current politics to the differences in the notions of curing and healing to perspective and privilege and grief and grace. As for anger, I have little space in my heart and brain for that today. Maybe later. Maybe in my next life when I come back as a stoned woman in an azure bikini and surf all day long and love the Bird Photographer and read poetry all night. So, maybe never. The Neurologist is incredibly supportive of our use of cannabis, and that is everything. I’m not in the mood to tell you about ESES today — if you’re interested, you can look it up on the internets. There’s very little known or understood about it, so you won’t be overwhelmed with information. You might wonder why cannabis doesn’t protect her from this bizarre epileptiform activity, and so do I. I do believe, with The Neurologist and Dr.Goldstein, that Sophie is having the least amount of actual clinical seizures in her life. During her last two bouts with ESES, she was having up to 7 giant tonic clonic seizures a day and hundreds of myoclonic ones.
I freaked out last night, had an hour or so of the past 24 years collected in my body brought to the surface, and it was Henry my son of twenty years who comforted me. Rather, we comforted one another. I’m so sorry, I told him. I’m so sorry for all of this. Henry, lying beside me, said, it’s okay, Mom! It’s made us who we are. Which is so good.