My story with this disease began a few years ago when an old high school friend was diagnosed with the disease. I was fortunate to be able to provide care and support for Sean by relocating to Chanute, Kansas in August of 2007 to help him live with this incurable disease. In mid-December, almost six months after my arrival, six weeks after his son Greyson's birth, a complication of ALS caused his untimely passing. No one is ever ready for a friend or family member to pass away, but the important outcome is to try and find ways to help remember and honor those in your life who are no longer with you in this life.
If you're in the Charlotte area, I'd love to have you join my team. We had a great turnout last year, 11 adults on the team and a few youngsters were a part of the day. Thanks so much for your interest in this cause, it will never be forgotten.
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April 13th, 2011 - Okay, so I wrote this stuff at the top back when I first signed up for the site, what was it, a long time ago. And for some reason this year, it's been on the back burner. But I've got a couple of weeks to turn it around. So I thought I'd write a little bit in the hopes it energizes you to help with the cause.
I still remember sitting in my cube at work, when I was still at the loan center as a facilitator for the Bank. Man, it seems like so long ago and in a way, it was. The cell phone rings and it's Sean, which surprised me of course. I mean, let's be honest here, the guy didn't call me much. After exchanging pleasantries, he tells me that he wants to tell me something, because he preferred I didn't read it in an email. And then he tells me, he's got ALS. Apparently, he had a few physical signs (shortness of breath climbing a ladder, difficulty skiing on a family vacation, dropping bags of groceries he held in his hands) and after a few (read: MANY) tests with multiple doctors, they excluded everything else and diagnosed him with ALS.
Read that last sentence. Here's the scary thing about this disease: There's no test to run to determine you have ALS. You can read more about it here below but that's the shocker about this thing. They don't know what causes ALS. That's why finding a cure for this thing is all the more important.
http://www.alsa.org/about-als/diagnosing-als.html
So, I call up my father, break down in a conference room, and just try to take it in. My boy, the kid who I used to ball with growing up, drive around in the Ranger, go to college with, be a groomsman at his wedding, move to Chicago, has an incurable disease. Weighs on a guy like no other.
February 2007. Sean comes out to visit. He seems normal. But I can tell he's walking slowly, deliberately. The pep's gone. Sure, we're still cracking jokes, it's what we do. I remember the first morning, after he got to Charlotte the night before. He's sleeping upstairs, I hear the shower run and then about 30 minutes later, still no Sean downstairs. So I'm curious about what's up, so I head upstairs, where I see him trying to put on a sock. And he's patiently working on it. I offer up my help, he of course says he'll get it. But I insist and help get him finished. To me that was the first time I realized how real this thing was. Here's a kid who could 360 dunk in college and he can't get a sock on his foot after a couple of tries.
I think everyone by now knows that I spent some time in Kansas helping take care of him. After I had committed to the move, I went out there in May for his birthday and he's using a walker to get around. From walking in February to using a walker in May. It just ain't fair, you know?
I've got a ton of stories being out there. And if you've not heard them, let's grab a beer some time and I'll tell you about them, but more importantly, him. Because what hurts the most is that people didn't get to know him like I did. Sure, he had other friends, and they shared moments with him, but selfishly, I feel like I got the best end of the deal. Because I got to know him, to care, laugh, cry, the spectrum of emotions and so many people got cheated out of having him positively impact their lives.
Our defining moment came in college. I had a bit of a breakdown over a girl and did what dumb college kids do, made a fool of myself at a party. And when we got home, Sean lit into me. Like a Christmas tree. And I needed it. Sean celebrated my successes, but knew that a true friend will help course correct. I'll never forget it.
So here it is, another year for me. And I neglect the notion that forever in life can be shorter than any of us expect. As tragic as Sean's death was, it helped drive home the life motto to find happiness in everything and keep positive about where I've been and where I'm going. Jeff Buckley gave one of the best lines ever in his song "Last Goodbye" when he said:
You gave me more to live for, more than you'll ever know
Sometimes, when I'm down, I play a quick video that always evokes some emotion for me. Tonight, watching it, I couldn't help but miss him. And that's a tough thing to work through, but it also is comforting. Because I actually embrace the fact that a 15 second video can move me to tears. I'll always have that...and thousands of other memories of a man who died too young, cheating everyone out of the chance to be a better person just for knowing him.
http://www.youtube.com/watch?v=AwDfsFTZZC4
Thanks for reading. You made my day doing so.
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