"Nobody expects the Spanish Inquisition" - Monty Python
“WHY ME??” Nancy Kerrigan, 1994.
Because Nancy. Nobody expects the Spanish Inquisition.
And man, those cross dressing, silly - walking purveyors of fine dead parakeets, didn't have any idea how right they were. I mean, imagine, you're a small Jewish family, living in your fifth floor walk up hut on the lower east side of Barcelona. A pot of chicken soup is boiling over the open flame. Has to be chicken soup because according to my Mom, chicken soup was always being made on momentous occasions. For instance, the day of my birth ("It was a gorgeous sunny cold February day,") my Mom went into labor whilst making chicken soup. Hence, the connection to all other momentous occasions. But, I'm losing track. Anyway, here's this family, about to eat, when the Spanish Inquisition just comes charging in, offering up very few options.
One - The rack, which I'm sure the inquisitors who were in charge of schlepping that thing up five flights, wanted most people to use out of sheer vengeance.
Two - Conversion. Right there. On the spot. Without even one second to take even a tablespoonful of the soup.
Three - Pack your shmattas and hit the road.
Oh yeah, immediate death.
Not great options. ALS doesn’t have great options either. You start out thinking, well maybe all that stuff won’t happen to me. I can handle using one of those push carts to get places, Then, ok I don’t mind having to only use a wheelchair. Maybe I will get great arms and be in a commercial as a smiling hair-blowing behind me kind of woman, throwing Frisbees to my dog. With great arms. I could still act, emcee as Cher, go out to dinner, and sing. But then I lost my hands, just one day, boof, I couldn’t hold my phone, then it grew more and more difficult to speak. Now, I can’t make noise if I’m in pain, or almost worse, when my funny friends are being funny. That hurts. What I think I’m saying is, never say, it can't get worse because that Spanish Inquisition will crawl right up your ass and say, ah, ah, ah, Ms. Negrin, not so fast.
I hope no one reading this thinks for one minute that my pain, or my disease is worse than your mom’s breast cancer, or your sister’s emphysema, and so on. I am just saying what the Pythons said. All those years ago. Nobody does expect the Spanish Inquisition, but we should.
I am so grateful I’ve lived the life I have lived, was able to earn my living doing WHAT I LOVED, performing for thousands of people in shows I got to write, produce and direct. And with the added joy of hiring friends to be in them too.
I am now facing the way I should die. I mean, man, we kind of talk about it, but now it’s THE topic around here. Do I let ALS smack me down one more time, and cause me to choke, putting the onus of my death in Bill’s hands? Scary for me and unfair to Bill. I remember when I was young, hearing that Mama Cass died alone chocking on a ham sandwich. I thought this was awful primarily because she was overweight and alone. Then I grew up and watched my Mom die from emphysema and my sister from asthma. The thought of chocking to death on my own saliva freaks me the fuck out. Or I can control it with my palliative doctor, and Bill and others, where I slowly take more and more drugs and they leave me off the respirator slowly. And I pass. Obviously the best choice, but then the question is when!? How much longer does Bill stay prisoner to my life. Earning no money, reliance on friends and family for our support!?
Can’t answer this yet. Maybe next time.