• author
    • Debra DeAngelo

      Columnist
    • January 23, 2015 in Columnists

    It’s time for some ‘Better Days’ for ALS patients, and those who love them

    That Cathy Speck is a scamp.

    Aren’t sure if you know her? Then you don’t know her. Once you’ve met her, you’ll never forget her — she’s a one-woman circus on a walker, with all the bells and whistles.

    Seriously. There are bells and whistles. Also horns and stuffed animals. Carousels are more subtle. Which is why I love her. Subtlety was never my best skill either.

    Some of you know Cathy as one half of the singing duo, Duval Speck, others as a relentless advocate for raising awareness about ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease.

    Aren’t sure if you know what ALS is? Then, again, you’ve never known someone with ALS, because you’d never forget it. ALS is a cruel killer, striking in the prime of life and systematically draining control of your limbs, and eventually the ability to breathe, speak or swallow. And yet — your brain is unaffected, perfectly aware of your body essentially melting. It’s a horror movie playing out inside your own skin. Worst of all, there’s no cure. An ALS diagnosis is a death sentence. The only variable is how long until it’s carried out.

    Cathy is in the midst of her ALS battle, and has already lost four family members to it. Rather than going with the inevitable flow, Cathy uses every ounce of her remaining energy to make sure everyone knows about ALS and pitches in to help find a cure. Because here’s the deal: You aren’t safe from ALS. It comes in two forms. One is hereditary, as in Cathy’s case. The other strikes randomly, without any family history. You could be next. Or your spouse. Or your child.

    Don’t wait for a personal lesson on ALS. Please come to Cathy’s next awareness/fund-raising event, “Better Days with Cathy Speck: An ALS Documentary Benefit,” on Saturday, Jan. 31, 4-6:15 p.m. at the Davis Community Church Fellowship Hall, 421 D Street. Not only will you meet Cathy and hear her firsthand (and often hysterical) stories of what ALS is all about, you’ll also meet independent filmmaker Nadine El-Khoury, who specializes in filming charitable and humanitarian stories. El-Khoury has turned her filming talents to following the progression of ALS in four individuals over the span of five years. Her film, “Better Days,” is near completion, and just needs a financial “bump” to get over the production hill.

    You can help bump up El-Khoury’s film simply by attending the event. As little as $1 is appreciated, and however many more dollars you are moved to donate is additionally appreciated. If you’d like to help but can’t attend the event, all is not lost. Go to http://www.gofundme.com/ddbn0k to donate, and also reserve seats if you wish to attend.

    These are the nuts and bolts of this event — but wait there’s more! Cathy lured me onto her “Better Days” team one step at a time, and next thing I know, I’m agreeing to emcee this shindig. This is where her “scampiness” comes in. Although I adore her to pieces, had she come to me and said, “Hey, can you be a publicity volunteer and also emcee my big fundraising event,” I’d have run away screaming like my hair was on fire. Not because I don’t want to help, but because I’m so overcommitted in so many ways right now, every day feels like I’m the mother bird running a gauntlet of baby birds, all with their mouths open, chirping frantically for my attention.

    Come on, now! I’m just one bird! I can only carry one worm at a time! And yet, there are six or seven hanging from my beak already! My beak is bushed!

    That was a really funny line, and I’m not even sure why.

    Anyway.

    Cathy may be dying, but she is nonetheless wily. She didn’t hit me with the whole shebang all at once. First, it was “Could you polish up my press release and distribute it?” Sure, no prob. “Cool. Could you also post it on iPinion?” Absolutely. “Great, very cool. Hey, how about flyers? Could you make some for me?” Errmmm, sure, I will find some time to design those. “And also make them in quarters, and have them printed and cut too?” Gahhh… I’ve never done quarters before, but I’ll do my best. “Flamingo pink paper would be great.” Sure. Will do. “And deliver them?” Okaaay, let’s see… I can squeeze that in at exactly 4:45 on Friday, between appointments.

    And, lo, all this came to pass.

    Then I get an email from Cathy, tossing around ideas for me while I’m emcee-ing the event.

    Wait, what?

    A speaking gig? In front of real live people? That is a potentially bad idea on so many levels, for all involved. A keyboard and a delete key offer an effective filter. My mouth? No filter. And, I pointed out to her, nobody’s coming to hear me yap. This is about you and Nadine, funding her film and squashing ALS.

    But, I relented. OK, Cathy, if you really want me, I’ll do it. (And of course, she already knew this, because, as I mentioned, she’s a wily scamp.) So, I tell her, here’s my angle on how this plays out: I’ll do introductions, be the segue between on-stage activities… be merely the thread stringing the beads together: The less anyone sees of me the better.

    Cathy agrees.

    Next email: She’s offering staging ideas for my live interview with Nadine: “Two chairs, a little coffee table, maybe a vase with a flower or two, a box of white wine and two paper cups, and we’ll have a comfortable ‘talk show.'”

    Waaaaaait, whaaaaat?

    And, you guessed it. Ms. Wily Scamp talked me into this too. All we need now is two ferns. And also: You. We need you — to come, to donate… to care. Would you? If nothing else, you’ll get to see me make a fool of myself. That’s gotta be worth a buck or two.

    CathyDebra

    Cathy Speck and I finally met after many years of corresponding via email in the course of her promoting Duval Speck performances and me serving as editor of the Winters Express. One day, reading her email about an ALS event, when Cathy was no longer able to sing because of her advancing ALS, I realized that there was a columnist in her! I asked her if she’d give writing a whirl, and in 2011, she began writing for iPinion. When I actually met her, a year and a half later, from her pocket, she pulled an old yellowed clipping of a column I’d written in 1998 about my friend, Jeannie Cushman, who died of ALS. I was touched, and stunned. Cathy kept it because she felt that she’d finally read something written by someone who “gets it” about ALS. This photo was taken the day we finally met in person, in September 2012.

     

     



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