I’m slowly learning how bad my cataplexy is. Apparently most people don’t have trouble drinking out of a normal water bottle? And don’t work to stay standing or to keep their head up when they laugh? These are things I’ve dealt with my whole life and had no idea they weren’t normal. I just thought I was lazy and didn’t have any self control. “Michelle why is your head on your desk?” “Michelle why are you slouching?” Um I don’t know because gravity sucks and I’m not as good at life as all of the other kids here? FALSE! Kid-version-of-me, teenage-version-of-me, freakin ADULT-version-of-me YOU HAVE CATAPLEXY!!!
I didn’t realize this until July. I had already been on Xyrem for THREE MONTHS, convinced I only had a few full body attacks every now and then, when a conversation with a neurotypical (i.e. my husband) revealed that laughing is an effortless thing for him. What the heck?!
I hate standing. Wherever I go, I look for the fastest and most socially appropriate way to sit on the floor, or get as many appendages as possible to be fully supported because cataplexy is real, being sleep deprived is exhausting, and gravity is a bitch. So concerts are my personal hell.
The last concert I went to where I had to stand up was Wilco at the Vic in Chicago in 2011. It was a disaster. Picture a girl who “faints” during the opening band and gets grilled about what drugs and alcohol she’s mixing. Fun fact, the girl is stone cold sober and had a full body cataplexy attack but we wouldn’t know that for another five years. Unfortunately we never got to see Wilco. I was tested up one side and down the other for epilepsy and other neurological disorders after that attack and when the basics were ruled out I was diagnosed with “migraines with aura; high stroke risk.”
Fast forward to Saturday night at the Sprint Pavilion in Charlottesville. Portugal. The Man. + comfy grass seating! I’ve been to concerts at the Pavilion since the Wilco mess but this is the first concert I’ve been to since the cataplexy realization. It was freeing to understand why staying upright is so exhausting. I was able to lie down on the grass and be a floppasaur without any inhibitions. Trading hyper vigilance for relaxation felt amazing and from my cozy spot on the grass I realized for the first time that concerts can be fun.
This is us these days. 