And the Oscar Goes To . . . All of Us For Pretending We're Fine
Folks, I mean this with much love and admiration when I say . . . we’re all liars.
We're all actors
Maybe I should have said we’re all actors. It’s a fact, after all. Stage actors give eight performances a week: six nights plus matinees on Wednesdays and Saturdays. They perform when they’re sick, pregnant, drunk, even when they’re dying. Ian Holm once admitted he wore an adult diaper onstage while battling explosive diarrhea. Judy Dench had the flu for a whole week and threw up in the wings every night, never missing a performance.
The dedication of actors to their role
Film actors are just as dedicated. Spencer Tracy barely made it through the filming of GUESS WHO'S COMING TO DINNER (1967) and died of heart disease just weeks after completing the film. Edward G. Robinson pushed himself through the final stages of bladder cancer to complete his final film role in SOYLENT GREEN (1973). And when John Wayne, who was dying of lung cancer, dressed for his job as a presenter at the 1979 Academy Awards, he donned a rubber wet suit under his tuxedo to fill it out so as not to alarm the audience with his emaciated appearance. He didn’t want to steal anyone’s thunder while handing the statue to the winner.
The show must go on
These performers knew their own personal story was coming to an end, yet they also understood that hundreds of people earned their livelihood working on that project. Not only did these actors personally need to keep working as a coping tool, they also took their contractual obligations to heart and made sure both their nuclear and show business families were well-provided for. To accomplish this, they put on a mask to hide the pain they felt from the ravages of illness. The show, as they say, must go on.
Our stage is real life
So too for those of us living with multiple sclerosis. Only, our stage is real life. We’re “on” most days and some evenings no matter how we’re feeling. We are members of our own exclusive Liars’ Club, assuming a fake cheeriness (oddly it can help us feel the real thing!), an artificial glow (from drug side effects and repeated exposure to X-rays), a bounce in our step (from muscle spasms, but do people really need to know that?), an artless, benign facial expression (from cognitive dysfunction or dizziness, early-stage dementia or plain old fatigue), and a determination to appear normal as we step outside our homes and into the world. When people say hi-how-are-you, we grin and say I’m good or I’m swingin’ or Allah has smiled on me today. Some people do their best Judy Garland and sing “Somewhere Over the Rainbow” wearing pigtails and red shoes and often carrying a miniature terrier. That one works best if you can actually sing, otherwise people will get depressed. However, there’s another group that really shines as dissembling fool-born cudgeons: politicians.
Lies, damned lies, and statistics
Politicians are better actors than all of us put together. Nineteenth-century British prime minister Benjamin Disraeli (1804-1881) famously said: "There are three kinds of lies: lies, damned lies, and statistics." At least he owned it—though it’s unclear exactly who he’s referring to—and we who huddle under the neurological umbrella have got it covered pretty well too. Lies and damn lies we do intentionally. Statistics we really can’t help.
Lies and damned lies:
- There are 400,000 people living with MS in the United States—Oops, it’s actually more like one million.
- Hmm, we used to have only four DMDs, the CRAB drugs, but now we have more than that. Uh. . . ten? Wait . . .
- Compare the percentage of relapses in clinical trials of Tysabri and Mavenclad. Um . . .
Membership in the Liars' Club
So, if you are avoiding membership in the Liars’ Club, we’ll save a seat for you just in case. Not a member of Actors Equity? We’ll nominate you for an Oscar anyway. Ah, the roar of the greasepaint, the smell of the crowd . . .
Does your employer provide workplace accommodations due to your MS?