dear mr. zappa (with video)

Dear Mr. Zappa, Dweezil, if I may,

First of all, I loved your concert, just as I did the summer before last when I saw you play live for the first time. Regrettably, I don’t experience much live music in Maine, so to be sitting in row seven of the State Theater near center stage, watching and hearing you work your guitar, seeing Sheila jam and witnessing each musical genius up there with you was truly sublime, and proved a much-needed escape for me. Thanks for coming to Portland.

The main reason I am writing, however, is not to shower you with praise—though to be honest my face hurt from smiling so much during the three-plus hours that you and your amazing troupe performed—but to tell you that something you said stung me. It was the comment you made during the audience-selected stage show you conducted during Bepop Tango when you told the dancers something like, “You need to be a little more epileptic than that.” I’m pretty sure you meant no harm, so I’m not scolding as much as I am hoping to enlighten you. You see, my nine-year-old son, Calvin, suffers from medically refractory epilepsy, which means that despite taking loads of powerful mind-numbing antiepileptic drugs he still suffers regular seizures and has so since he was two. The seizures are not fun to watch, they are not weird, they are not humorous, they are not a spectacle, they are not to be made fun of. I wager if you saw your own child have a six-minute convulsive seizure, one in which he didn’t breath during the first several, turning blue as a result, you might not have chosen to instruct your dancers to be more “epileptic.” And since one in one-hundred Americans suffers from epilepsy—likely all of them medicated and more than a third lacking seizure freedom despite the medication—I imagine I wasn’t the only audience member bruised by what you said.

I know that your father lampooned most anyone—gay men, Catholic girls, Jewish girls, etc.—and that no one was immune. I get that. And though his legacy may not be why you chose to say what you did, I want to point out that people with epilepsy have, for thousands of years, been trying to free themselves, not only from the seizures themselves, but from the witch hunts, the stigma, the myths, misconceptions, institutionalization, forced sterilization, shame, discrimination, marginalization and mockery, none of which they deserve to endure on account of their disease, their disorder.

I want to leave you with this short video I made of just one of perhaps thousands of seizures Calvin has had in his short life. I have no doubt that the seizures and the drugs have robbed him of his true potential, whatever that might’ve been; it is likely lost.

Thank you for listening, Dweezil. I'll keep listening too.

Christy
Calvin’s mom

This video may be difficult for some to watch. If you cannot view it please click here to view it on You Tube.