More on PANDAS

Watching an episode of 20/20 about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and my heart just… Sees.

#PANDAS is, in easy terms, when strep throat in certain kids means that antibodies attack the brain instead of the strep. For these kids, they may experience sudden behavioral changes or sudden on-set OCD.

I remember getting my OCD diagnosis. The psychiatrist had asked a million questions, and a final one– “Any other medical history we’ve missed?”– and I, feeling silly, said, “Well, I broke my elbow twice. And had strep throat a hundred times.”

She looked up sharply. “Strep throat? Did you know there’s a lot of evidence of a strong connection between childhood strep throat and OCD?”

On the show tonight, nearly the same conversation.

“Anything else just before all these symptoms?”

“Well, he had strep.”

So, as I watch this, I see OCD obsessions and compulsions on the screen where the interviewer doesn’t. Maybe I’m reading into it. But maybe not. I can see my seven-year-old self in some of their actions, hear myself in their words.

The body is a weird, magical, glorious beast, and the world is fallen. I’m just so grateful for the doctors, psychiatrists, and therapists in my life that made connections, did or learned the research, and led me to freedom.


Current safe space. Along with a space heater, some string lights, and parked on my futon, this is where I’ve been spending my days lately. (You don’t see the other half of the office that needs to be cleaned!) I know I’ve been posting a lot of pics, but I’m feeling really, really grateful for this sliver of joy and peace, this wall of books.


Oh friends, I have so far to go.


I just spent an hour sobbing to my therapist and saying things like “I hate being a work in progress… But that is what being a human IS!” I joke with friends and coworkers sometimes that I have a never-ending pursuit of becoming a robot, and what I mean by that is “cracking the code,” figuring out the “perfect” routine, the perfect process and schedule and even meal. It’s like I want to boil life down into “if I get up every day at this time and I eat this exact meal twice a day and I write from this time to this time and I go to sleep by midnight,” I will have figured out the secret of the universe of how to be a successful and perfect robot. I mean… Human.


I always say I’m a recovering perfectionist. Days like today feel like an absolute faceplant into realizing what a grip it still has on me. I don’t want to be loved by tens or hundreds. I want to be loved BY ALL.


Basically, I want life to not function like life does. I want myself to not function like I do. I want to be flawless, and I hate even that desire because I know in my heart how foolish it is.


So then I wallow in my failures. As a friend, a writer, a worker, a body. As a not-yet-robot. As someone who has stupid goals of “becoming a robot.”


And so, back to the drawing board, right? For me, that’s always prayer and rest and lists. Robots don’t pray or rest, so honestly, what a horrible thing to want.


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Even though I had a sick day, it was good. I listened to my body and my limits and said, “OK, I understand.” My coworkers covered for me while I spent all day resting. Then tonight I wrote a long, rambling paragraph and figured out the name of my character.


It is a wild and holy thing to create characters and stories. And mine aren’t even ex nihilo, nor will they ever be as complicated as actual humans. But I get to mimic creation, and it’s so powerful, so humbling.


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