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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:

  1. Why, I slept very well and didn’t once get up to pee, and thank you so much for asking!
  2. I’d be glad to act as your pacer for the Boston Marathon!
  3. Of course I’m sexually active! I did twenty-three Tour de France guys just the other night without falling off their bikes!

Statistics:

  1. There are 400,000 people living with MS in the United States—Oops, it’s actually more like one million.
  2. Hmm, we used to have only four DMDs, the CRAB drugs, but now we have more than that. Uh. . . ten? Wait . . .
  3. 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 . . .

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • chong61
    4 months ago

    Please add me as a member of the Liars’ Club.
    Do I send the group $$$ for my membership acceptance or do I just simply go through tons of pain every day and that makes me an
    automatic member? I have my 20 years of saying “I am ok”, will that get me extra stars?

    Arvilla

  • Kim Dolce moderator author
    4 months ago

    Arvilla, I’m making a list and checking it twice–and you’re definitely on it. We’ve all paid our dues ten times over, so you’re good. Thanks so much for commenting! Best, Kim, author and moderator

  • 6fh0mq
    4 months ago

    I loved this article…cracked up! I had to comment because it spoke to me. How often do I lie when someone gets that real serious look on their face and says, “ so, how are ‘we’ doin today”? What ?? WE? I just smile and say – oh we’re doing just fine. (Yeah. Right. I haven’t felt fine for over 15-20 years! What the heck IS fine anyway? ) But, I am ridiculously tired of whining. What good will speaking the truth do? Really. I just won’t do it! So…. I’m fine really…just fine. Thank you.

  • Kim Dolce moderator author
    4 months ago

    @6fh0mq, I’m so glad you were entertained. You sound very together about what to share with others, I can totally relate. And, I love that existential question: What the heck IS fine anyway? It kind of reduces How Are You? to a simple human connection, which is just fine–and so are we. Thank you so much for commenting! Best, Kim, author and moderator

  • BethSlusher
    4 months ago

    How true all of this is. Sometimes I act because I don’t want to explain, sometimes because I don’t want sympathy and sometimes because I’m too damn tired. With some people it’s too much work and just easier to go for the award. It’s not like that all the time with all people, thank God for those folks, and there are those I can tell that I feel worse than dog food. They can laugh or cry with me genuinely and ask what I need or want. I hope that I can be that kind of friend too.

  • Kim Dolce moderator author
    4 months ago

    @bethslusher, I totally relate to everything you wrote. I find it a frustration and a bore to endlessly explain myself. Inventing a new narrative is fun, refreshing, and ultimately empowering. Thank you so much for commenting! –Best, Kim, author and moderator

  • Tazz
    4 months ago

    I’ve never felt really comfortable with the “white lies” of telling people I’m doing fine when I’m definitely not doing fine, but most people don’t really want to know – they’re just asking as just a social nicety and they expect a social nicety answer in return. So, for people who do know what I go through constantly with the ups and downs of living with MS I’ll just say that I’m having a crap day or week if that’s what’s really happening. They can then enquire further if they want to, or not if they don’t want to.

    For most enquiries I just reply that I’m “muddling through” – which is actually the truth – my impairments are such that I’m never sailing along “just fine”, but mostly I’m not in the pits of despair and total dysfunction either. As a phrase it covers a wide range of days and it stops perpetuating the myth that just because “I look fine” I am fine.

  • Kim Dolce moderator author
    4 months ago

    @tazz, love “I’m muddling through,” you’re so right. it covers how you feel without launching into a long narrative. A good solution that spares your conscience a big bruise from telling a lie and spares the listener and you an uncomfortable moment. Thank you so much for sharing your own method! –Best, Kim, author and moderator

  • potter
    4 months ago

    I guess we all become actors once we are diagnosed with MS. We slightly smile and say we are hanging in there. People say we look good, not ill at all. I use to just smile but now I tell them that MS doesn’t show on the outside. The damage to the brain and spinal cord is on the inside. I decided that someone needs to educate them about MS.

  • Kim Dolce moderator author
    4 months ago

    @potter, love your response: MS doesn’t show on the outside. Short and sweet–and true! As always, thank you for commenting. –Best, Kim, author and moderator

  • Lily
    4 months ago

    Love this! Yes, thanks, I am already a member! 😀

  • Kim Dolce moderator author
    4 months ago

    @Lily, thank you for the love–and welcome aboard, member! Thank you so much for sharing your thoughts! –Best, Kim, author and moderator

  • m.Todd
    4 months ago

    I need to admit to myself that I am in the Liars’ Club. I seldom tell the truth about how I feel, even with my wife. She has enough life/work issues to deal with. I feel telling about me would just be selfish whining. Instead I always tell her I am feeling good- just a little tired.

  • Fawsiya
    4 months ago

    I do the same thing. It’s got to the point that I hate being asked how I am, I say to myself that other people honestly don’t have the time for the truth or don’t want the truth for a host of reasons- life.

    At work even if I feel horrible, the answer is always the same. I’m ok, I’m alright. I think a big part of it is that if I admit it out loud to others then I put myself in a vulnerable position.

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