So I've been a little bit emotional lately. But not because graduate school is hard or a girl broke my heart or the politics of the day.
Actually, it's because I watched a special on ESPN about a kid who has an incurable disease. Usually the sobby stuff doesn't get to me, but this one hit me like a runaway freight train without Denzel there to save the day. If you can, and I would HIGHLY suggest it, please check out the video on ESPN's website and read the article. It's really well done and really touching. I can honestly say nothing on TV has ever affected me so strongly. If you don't tear up watching this, I don't think you're human:
Being the emo kid I am, I had to put into words the emotions I'm feeling. So let's begin at the beginning:
If you've known me for awhile, you'd know that I am not a big crier. In fact, this was the first real cry I've had since my dad died almost ten years ago (unless you count the time I was coming off the oxycontin after my first shoulder surgery and started bawling, but that's a different story).
So I'm settling in at the UPF biblioteca, writing some bullshit paper on the welfare state's impact on poverty. In the interest of killing time, I head on over to ESPN, as I do on occasion (every five minutes). Somehow I come across the story of a kid who has Hutchinson–Gilford Progeria Syndrome. It's a disease where the bodies of children age 10 years for every year they live. I click on the link and I was sucked in from the first moment.
The kid's name is Josiah Viera. He is six years old and he loves playing baseball and the Philadelphia Phillies. Despite long odds of not surviving his first two years, he did. And to many he has become one of the most inspiring people they have ever seen. Despite the disease, he has an amazing spirit and a smile with enough wattage to light up all of Paris.
His story and his sheer joy with baseball struck something really deep within me, on an almost spiritual level. Maybe he sort of reminded me of myself when I was little. Maybe it's because I have a niece I adore who is the same age. I don't know. All I know is that I was touched in a way that a TV program had never touched me before.
I mean, yeah, you know me. I've always been a little bit emotional, if not a big crier. But I am the same guy who cried at an episode of Highway to Heaven when I was a little kid and who sometimes feels bad for pitchers getting shelled during big games (unless they're on the Yankees). Well, a couple of minutes into this video I started tearing up in a major way. There were tons of people around me doing work and I don't know how well I hid it. After all, the tears were dripping off my face and onto the table.
There's just something transcendent in that smile Josiah gets when he's playing baseball. It's such an exuberant, joyful, full-of-life smile. And at the same time it's so heartbreaking. He doesn't have much time left. He gets sick a lot and regularly has strokes and seizures. His story is bittersweet and beautiful and tragic and uplifting, all at the same time.
Words can't describe all the intensity of the feelings I had in watching this. Throughout the rest of the day I kept tearing up in the library and had to run to the bathroom a couple of times to compose myself.
In some ways, this shows just how unfair life can be. I think we all wish there was something more we could do for him. To make his life even more special. He's given us all so much, we want to give something back. I wish with all my heart I could take away all the pain and suffering. So he can play baseball for a long, long time. So he can play catch, run the bases and watch his Phillies win another World Series. So he can smile for us and inspire us for many more years. I'm honestly getting teary-eyed just typing this.
Seeing the smile on his face when he got that hit during his Little League game was the beauty of life distilled in one moment.
At the heart of it all is a kid who has a wonderful, beautiful spirit who has touched the lives of so many people in ways he probably doesn't even know. I want to tell him how much he has meant to me, even if he is too young to really comprehend it.
Now I'm just rambling. There's so much I'm feeling, so much unsaid that I can't get out. The kid inspires me while at the same time shattering my heart into a million pieces. I went on the website for his family and gave $50 to help pay for his medical bills and wrote his mom an email trying to describe what Josiah's story has meant to me. I couldn't write it in one sitting because I kept getting overwhelmed by emotion.
I'm even toying with the idea of running the NYC Marathon next year as a fundraising event for him. It wouldn't be much, but it would raise a little awareness and probably get the family a grand or two. I don't know what else to do.
I'd give everything I had if it could buy him more time. I do take solace in the fact that he has been able to have a joy-filled life thus far. He played Little League. He's heard his name chanted from the stands. He's met his heroes, the Phillies. It's a beautiful thing.
I hope the rest of his days are filled with love, joy, laughter and baseball. He deserves it more than anyone.
PS If you get the chance, check out the website his mother created and throw a couple dollars their way:
Weird. I never watch these things and ended up watching this one this week. Reading your reaction makes me wonder: why is this story so relatable?
ReplyDeleteMaybe at the ripe old age of 31, we are old enough to know that we get old and die, but are still in some ways little kids.
Or maybe it's impossible to shake the idea of death if we're already intimate with its existence. We're all going to die, but this kid knows he's gonna die, and soon.
Makes ya wonder though, if this kid has the body of an old person, what kind of things does his mind know?
Chunnamark! It's been a long time! Thanks for reading and checking out the blog! I don't know why it's so relatable. He is just such a genuine, joyful spirit in the face of a horrible situation. He still smiles and still loves. It's a truly amazing thing. Anyway, I hope all is well with you!
ReplyDelete