I've never met anyone else with the same liver disease I have. Never. My doctor assures me there really are other patients with primary sclerosing cholangitis - afterall, she treats many of them - but most of the time, it seems I'm the only one in the world with this awful curse. PSC is commonly diagnosed in one's 40s, next commonly in late-teens, early-20s. It's so much easier to think of older people suffering from this, not the five year old I was when I was diagnosed, or the more common whole-life-ahead-of-me teenager.
Then Dad found an article in Thursday's (12/31/09) USA Today and saved it for me...
Clock's always ticking for Penn State senior
- Mike Lopresti Gannett
He was 17 when the diagnosis came. Primary sclerosing cholangitis, the rare liver disease that killed Walter Payton.
Now Tom Golarz is a Penn State senior, a walk-on who has worked his way into playing time, an economics major with graduation ahead. And then what? Many active years, he hopes. A liver transplant someday to save his life, he figures.
But before a future with no guarantees, one last college football game.
The bowl sprinkle becomes a deluge in coming days, and nearly all the players will be more famous than Golarz. None will be more appreciative of the moment.
"It's hard to sum up how it feels to come to the end," he said over the phone from Orlando, where Penn State will play LSU in the Capital One Bowl on Friday. "I think I'll have a better understanding of what it means to me five or 10 years down the road."
Golarz will be on the Nittany Lions' kickoff and punt-return teams, as usual. No walk-on at a national powerhouse has an easy road to the playing field, since about seven dozen scholarships are given out to more highly prized prospects.
So what about the defensive end who twice during his college career needed a tube put down his throat to clear his bile duct?
Who understands that the current definitive treatment for many with his condition is a liver transplant, and that Hall of Famer Payton outran NFL defenders for years but could never outrun this, losing the fight at age 45?
"I assume they found out about his disease later in his life," Golarz said of Payton. "Comparing it to my situation, I guess, gives me a little bit of hope that I've caught it so early and maybe have a chance that I can really stay on top of it."
But the clock ticks for this, just as it does at the stadium.
"A transplant," he said, "is probable at some point in my life."
He hopes a new treatment will pop up in time to help, hopes it never gets as far as a transplant.
A lot of hope in this Nittany Lion's life.
One college offered Golarz a football scholarship. Instead, he decided to walk on at Penn State with dreams of Big Ten Conference football, since he had two brothers play at Northwestern.
"What it came down to is, I don't know how this disease is going to go," he said. "So sometimes selfishly, I think I want to do the things that make me happy."
Right at the top would be playing football for Penn State. The 6 a.m. workouts during the offseason? No problem. More wind sprints? Done.
"In comparison with some of the other things I've had to do in my life," Golarz said, "that's not asking too much."
Some days, the wall he hits by nightfall is harder than granite.
But not trying to play was never an option.
"When I first got (the diagnosis), I struggled a lot with 'Why me?' " he said. "I'm 17. I'm not supposed to hear about life and death and be thinking about 30 yards down the road getting a liver transplant. That took a long time to get over.
"I'm now in the position where maybe using it to get awareness of this disease could help. Maybe that's why God dealt me this card, where I could help other people. I like to think of it that way."
LSU will be a dangerous opponent Friday for Joe Paterno. He has a special-teams player who knows of one worse.
We are all Penn State fans around here - It's Poppop's alma mater, and he is the truest, most loyal, diehard PSU fan you could ever imagine. And I guess I'm technically not a fan, but I definitely would be if I cared even the least bit about football. :)
I can't believe what this kid is doing, and the hope he has is amazing. I'm excited someone like this (and even someone like Walter Payton) can use his growing fame to raise awareness, perhaps fund research, catalyze the movement we need to find a treatment option that isn't the enormous risk of an invasive liver transplant. The nurse and patient in me wants to yell at him for playing (playing a contact sport? this contact sport?! are you kidding me?!) but I'm guessing he's been passionate about this sport for his whole life - Telling a 5 year old to avoid contact sports is different than telling someone who has lived and breathed football for 17 years that they need to immediately stop playing. Sure, the right impact could rupture his spleen, and combined with other factors, cause him to bleed out before they even got him into an ambulance, but I don't think his story is going to end that way.
He has too much hope, and his realization of the need for awareness is just too promising. I wonder if he'll go pro - if he'll take that risk - and what else he'll do down the road. But most of all, I hope he makes it. I hope we all make it.
