Remember that childhood taunt? There were a number of versions of the second half. When he does the Irish jig, he resembles Porky Pig! Or when David comes out to play, all the children run away! Regardless of how it ended, the start was always the same:

David is a friend of mine. He resembles Frankenstein.

I don’t know how much Dave heard that growing up, but he’s embraced the idea in adulthood. He’ll tell you that Frankenstein is his hero. Who would he choose to play him in a movie? Boris Karloff, of course! Or maybe Peter Boyle. (If either of them were still alive.) He’s got the mooooooooves like The Monster. But why?

Dave has a rare disease called Myotonia Congenita (made famous by fainting goats and kittens) and he, quite literally at times, resembles Frankenstein.

The disease is complicated, but the following video offers a pretty good explanation. Anyone who knows Dave personally – even those who aren’t aware of his condition (because most people aren’t) – will recognize some of the signs they’d never noticed before when they see the way the videographer Jim resembles Dave.

Dave is an active guy. His Myotonia Congenita doesn’t stop him from doing things. He roughhouses with our girls, runs 5Ks and plays softball pretty much every season of the year. His disease usually goes unnoticed because he is vigilant about warming up, which is amazing when you think about it. He’s always thinking ahead, planning out his movement and activities, though you’d never know it. It’s just become part of who he is and what he does. When he’s playing sports, he’s always in motion. You won’t ever see him sit in the dugout during a softball game. He’s on his feet, moving.

In all the years we’ve been together, I haven’t heard him complain about his disease or blame it for anything. I’ve seen him deal with the side effects – the physical pain that comes from it, the giggles his funny movements and stumbles elicit – quietly and with humor. He rarely mentions his condition. (In fact, most people who know about it, heard it from me.) No one on his softball team knows about it. He’s the oldest of the group by a decade, so they attribute his stiffness and constant warming up to him being a quirky old guy. The truth is, he’s a pretty talented athlete – what his disease takes away, he makes up for with heart. He’s not afraid to dive or slide or look silly making a play. He’s there to play, and he goes for it every inning, because he loves the game. And because he’s never quite sure if it will be his last.

Yesterday, at the final game of the fall softball season (at his beloved Firestone stadium) he froze up and fell to the ground – just like Jim in the video – on the way to first base. That was the first time I ever saw that happen. After hiding it half his life, I really saw what his disease can do to him. He clawed his way to the base, and after about thirty agonizing seconds, got up and brushed off his clothes and the whole ordeal with a joke. The team clapped and cheered. Julia shook her head and laughed, “Classic.” And Dave went on to play a great game.

At home, when I mentioned what happened, he made a few jokes and said, “I’m just thankful I get to play. You know, I couldn’t play on an ultra-competitive team that’s all about winning. They wouldn’t tolerate that kind of stuff. I’ve got a great team.” No complaints. No excuses. And when I saw him, tight-lipped and holding his breath, the way he does when he’s in pain, still he said nothing, except, “I’m sorry I’m such a pansy,” when he saw me staring.

Now, when Dave reads this, he’ll shake his head and tell me I’m dramatizing it. He’ll tell me there are a lot of people out there who endure a hell of a lot more. I know that’s true. But this morning, the girls asked their Daddy to give them a train ride to breakfast and with tight lips, held breath and muffled grunts, he did. That’s worth noting, I think. Regardless of what anyone else is dealing with, I see what he is dealing with. I admire him for the way he does it.

Dave has long felt that his condition is embarrassing. Maybe it is, I don’t know. What I do know is the way he handles it is inspiring. Though he makes it a joke, Dave admits that “no one really wants to be Frankenstein. I’m Frankenstein.” But I’m proud to be his bride.


Comments

2 Cool Kids Commented

  1. Triplezmom on October 15, 2012 2:28 pm

    Wow. What a challenge for him to handle with such grace. It’s wonderful how much you appreciate what he’s going through. Thank you for sharing his story.

  2. Some days are good. They are very, very good. : My Mommy's Place on February 6, 2013 5:27 pm

    [...] doctor we met with this morning was a geneticist. She wanted to talk with us about Dave’s myotonia congenita and the possibility that Jackson has inherited it. In the past, we were told there was nothing we [...]

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