Letters to Neurologists, #2,564,341
during Fist, Flag, Fire Times
What are we going to call these times in the future, if there is a future? The Clown Age? Dumb-Dumb Times? The Last Gasps of the Patriarchy Times? The Continued Idiocy and Effrontery of the Patriarchy Times? The Laughable Lack of Critical Thinking Times? The Emoji Fist, Flag, Fire Times? Help me out here. Help us all out. Jesus.
It seems really goofy to be taking umbrage at something as normal and run-of-the-mill as neurology departments at world-class facilities, but I am nothing if not goofy, plus, at this point it’s kind of amusing. A diversion, maybe, while the country burns. That sounds flippant, and I don’t believe in anything being relative, but being irrelevant is strangely empowering. I’ve been trying to get an adult neurologist for Sophie, one who’d be interested in taking her on, to perhaps shed some light on what the hell has happened to her gross, fine and oral motor skills (is it sub-clinical seizures? is it some underlying clusterfuck that has never been seen? is it the normal course of events for a brain that has been fighting a lot for a long time?) and now what appears to be a kind of dystonia that is absolutely driving us all nuts. Sophie, Sophie, Sophie. Nice Neurologist is attentive and making a valiant effort to figure it out, but I don’t think it’s a tall order to want some fresh eyes, to take Sophie to someone who might know something that we don’t.
Cue Mrs. Braddock’s laugh — Mrs. Braddock, Benjamin’s mother in The Graduate. When I searched for it now on the world wide webs, it brought me to my old blog which is evidence of how much I love it. Here’s what I wrote there in 2015, before the rough beast began to slouch towards Bethlehem, ready to be born.
I periodically use the cue words: Mrs. Braddock's laugh. That iconic scene from The Graduate includes the most maniacal, fabulous laugh ever uttered by a character or an actor with the possible exception of a Jack Nicholson sneer from one of his iconic roles. The laugh is something that I call upon during difficult or absurd situations, most of which happen during my interfaces with the Systems of Care around Sophie's epilepsy. Even if I am the model of restraint, calm and cool, on the inside, I'm throwing my head back and screaming the scream of the absurd.
After a truly dogged and patient effort to obtain an appointment at aforementioned world-class facility, everything came to nought. And I mean, literally, nought. All efforts were in vain. Nil. Nada. I thought carefully and long before I reacted, but like we do in these times, I went to The Portal and sent a message expressing my fury. Here it is:
I am upset at the way your office has handled our "case" -- taking weeks and then months to respond to my request to have my daughter seen by an epileptologist and not a general neurologist. When I did get any communication from your office at all, it was condescending and, frankly, ridiculous. I was told that my daughter "didn't need" or "qualify" for an epileptologist -- this, when I explained that she is THIRTY YEARS OLD and has had a refractory seizure disorder and developmental disabilities since she was two months old. I had her records transferred from her pediatric neurologist, xxxxxxxxxxx, to you and never got communication that you needed anything else. Today, I received a random letter in our portal that directed me to call the epilepsy department to make an appointment. The receptionist had no idea why I was calling or what the vague letter was about.
The way we were treated by your department is emblematic of our health care system, how constrained it is, how absurdly inefficient and most of all, how poorly it treats disabled persons. As a former member of the board of the Epilepsy Foundation of Greater Los Angeles and a veteran of the epilepsy world, having cared for my daughter and advocated for hundreds, I can attest to this being an old story and fairly typical of neurology and epilepsy care in general.
I will seek the care my daughter deserves elsewhere or remain with her current pediatric neuro.
Elizabeth Aquino (Sophie's mother, conservator and caregiver)
Bless their hearts.
I don’t have the same energy I had years ago. My fury is both tiny and inexhaustible, my sharpness is honed to a point, my sense of the absurd is all-consuming.
Thank you for listening and reading, Dear Reader. I’ll leave you with this:
I love you and your letters. I wish I could stop time in that clinic and sit everyone down in a circle, take away their phones and other devices, and ensure their rapt attention while it was read aloud to each and every one of them who has ever been a gatekeeper for services (which is likely all of them). I wish I could make them sit in silence afterward and squirm with discomfort and let your words settle like nettles on their skin until someone got angry enough to stand up and rally them all with a cry of "This is bullshit! We can't operate like this anymore! What are we going to do?" But since that's not an option, I will hug you from afar and set my jaw in rage with yours and imagine you laughing that maniacal laugh while you bake something divine. I adore you.
What are we going to call these times in the future, you ask. We are in the age of fragile masculinity but psssst, don't tell, they think the solution is being aggressive, tough, violent and condescending.