Lucky diseases get terrific and afflicted spokespersons to raise awareness, raise funds, and generally get in the press’ and public’s face about the need to do something. Spinal cord injury got Christopher Reeve; Parkinson’s, Michael J. Fox; Erectile Dysfunction, Bob Dole. These three all showed their disease to the world. Well, Bob Dole didn’t show his. They fought, or are still fighting, the good fight in Congress, in the media, and in their personal lives. They showed the world simultaneously how horrible these diseases are – the breathing tubes, shaking, limp dicks – but also how afflicted does equate to helpless. People with chronic disease can continue to contribute to society in meaningful ways, whether through their philanthropic efforts or their continued careers, or both. It is inspiration to see them confront their illness openly and yet still continue their life outside of disease.
MS has Squiggy and a Mouseketeer.
The first person to acknowledge having MS that I recall seeing in the media was Annette Funicello, former Mouseketeer on the Mickey Mouse show, former B-movie beach bimbo, and, her most prominent role in my lifetime, Jiffy peanut-butter spokes-mom. I saw her interviewed on a talk show. She looked horribly old and brittle. She was showing off a cane that someone had made for her with Disney characters all over it. It was cute … for a cane.
I remember the talk show host constantly commenting on how brave she was. Did she have to pull the cane from a burning building? Did she stand up for the rights of the cane during the anti-cane movement?
Apparently just to have MS, and not die, is brave. Boy, bravery sure ain’t what it used to be. On the upside, how brave am I? I have MS, and I have allergies, and dry skin … I totally had pneumonia once in college! There should be huge statues of me freakin’ everywhere. Wait, I had the flu last year, and, that’s right, didn’t die … alert the media!
I attended an MS Conference maybe a year after my diagnosis and the keynote speaker was Eric Lander, the actor who played “Squiggy” on The Laverne and Shirley Show. I loved Lenny and Squiggy. They were the best part of the show. And their entrances? Who am I to say, but I do think Kramer borrowed heavily.
Eric Lander was introduced at the conference and he worked his way slowly and unsteadily up onto the stage, dragging his right foot and swaying. These were the same symptoms my mother was experience at this point and I was hopeful that he would speak on his fulfilling and active life, mobility and stability challenges and all.
Then he spoke. Turns out he hid the fact of his MS diagnosis for as long as he possibly could, fearing that his career would suffer. (Had he been hired since the Laverne and Shirley show? He had a line or two in “A League of Their Own” directed by Penny Marshall – but she was Laverne, so I don’t count it.) Once his gait was visibly affected by the MS, people assumed he was drunk. He was, after all, an aging, unemployed former sit-com star, so not a stretch. And Eric admitted to letting people believe this and he even played it up, dropping remarks about late-nights out at fictitious Hollywood parties, because, in his words, “being a drunk is better than having MS.” That is so inspirational. I actually missed Annette.
Once his diagnosis progressed to further visible symptoms, people close to him guessed something more was wrong. When they finally guessed MS, he decided it was time to tell the world about his illness. And sure enough, he told us, he was right, no one did hire him after his diagnosis. See, he was justified in hiding his MS; MS kills careers. (Wait. No one hired him before … .) So Squiggy was not the best of keynote speakers for an MS event - having hid his illness, preferring to be a drunk, fessing-up only after being “outed,” and having accomplished nothing much in his career since or before. Again, another “former” as our MS advocate. Though, I guess he, too, must be hailed as “very brave” for continuing to have the MS.
Since my early exposure to and disillusionment with Squiggy and the Mouseketeer, more MS-afflicted celebrities have “come out,” with varying levels of success as spokespersons. Teri Garr came out soon after her late diagnosis. I had the pleasure of hearing Ms. Garr give a keynote address at an MS Conference years after the Squiggy incident. She, too, limped and teetered, MS-style, on to the podium, and then delivered an inspirational and very funny speech, from which I still recall her comment “When I was in denial, I wouldn’t even watch MSNBC.”
Montel Williams is another successful spokesperson, openly discussing his diagnosis while actively employed. I appreciate seeing people acknowledging their MS while they are relatively unaffected, like myself. It shows the true range of the disease and reminds the newly diagnosed that end stage MS is just that, end stage, and not even everyone gets thereI am not so naive to think that I will always be so unaffected, or even so chipper. But I am now, and I have MS. Why only look at the dark side of the moon.
Still, I can’t help but wish … if only someone better would get MS. Sigh. How is Kevin Spacey feeling?
