Lake Zurich's Jordan Johnson won't give in to Lupus

The weather was perfect in California last June.

The sun and warm breezes beckoned. And so did all the college campuses that Jordan Johnson had planned to visit.

This family vacation, which doubled as a whirlwind tour of all the West Coast colleges that intrigued Johnson, couldn't have been more perfect.

And yet, there were times that Johnson, now a senior at Lake Zurich and the starting catcher for the baseball team, felt like staying in his hotel room all day long. In bed.

"I distinctly remember feeling like I couldn't even get out of bed," Johnson said. "I was in so much pain."

Johnson had been in pain before. Just not this much.

It all started about a year ago, a couple of months before the vacation to California. His knees began to hurt and he figured it was due to the stress involved in squatting behind home plate for extended periods of time.

But the 2009 baseball season had just started and Johnson was determined not to miss a beat. So he went to physical therapy. Hours of it.

It helped, but just for a while. Eventually the pain got much, much worse.

And Johnson had no idea why.

"Things really got bad while we were in California," Johnson said. "I just remember thinking that there's no way a 17-year-old kid should be in this much pain. Something wasn't right."

Johnson, who also inexplicably began losing weight (about 20 pounds total), certainly was right about that.

It took dozens of doctors' visits and blood tests, not to mention months and months of waiting for results to come in, but Johnson finally got an answer for his mysterious aches, pains and health problems.

Lupus.

This past fall, just as his senior year was getting underway, Johnson was told that he has Lupus, a painful autoimmune disease in which the body essentially attacks itself. Organs that are typically affected are the heart, lungs, kidneys and joints.

Ironically, Johnson's Lupus seems to be centered in the joints of his knees, a particularly cruel twist for a catcher.

And yet, Johnson has somehow managed to find the mettle to start nearly every game this season for the Bears.

"Jordan goes through an enormous amount of pain to contribute to the team success and give it everything he has," Lake Zurich coach Gary Simon said. "This young man shows an enormous amount of courage and determination daily."

It's worth it to Johnson, who grew up on baseball, loves the game and dreamed of playing in college one day. He was consistently hitting .450 as a freshman and sophomore and Simon says that Johnson was projected to be a superstar as an upperclassman.

Then, the pain hit and everything changed.

"There's always the 'Why me?' thought that goes through your mind," Johnson said. "These last two years have been like culture shock for me. I go from hitting around .450, thinking I want to play in college and then all of a sudden, I'm hitting .200. I'm always hard on myself so I'm thinking 'What did I do, what did I change?'

"I don't like to blame it all on the Lupus, but really the only thing that's changed is that I have this disease. That's the frustrating part."

And that's just the half of it.

The mental battles aside, Johnson has a physical war to fight every single day. Twice a day, he takes medications for his Lupus that he'll probably take for the rest of his life.

But even that doesn't always provide enough relief.

"Each day is its own battle and some are worse than others because I may have a flare-up or something," Johnson said. "It's just this soreness or aching that for most people might be there when they first get up and lasts for like 10 or 15 minutes. Mine doesn't go away and sometimes it's so bad that I don't want to get out of bed. That kind of rains on your day.

"Sometimes when I really don't feel well, I'll just have to kind of throw in the towel and apologize to coach and tell him that it's just not my day. That's only happened a few times, though."

The rest of the time, Johnson just grins and bears it, but gladly. He never thought for a second about giving up baseball.

As long as he felt he could contribute, Johnson wanted to play, to soak in his remaining days on the diamond as thoroughly as possible.

"Almost every inning is its own battle," Johnson said. "Going down in that squat doesn't feel very good on my knees sometimes. There was talk about moving me to another position where there wasn't so much legwork, but I didn't want to possibly take away a position from someone else. Plus, I love catching.

"So I just accept the pain and I try not to think about it. I try to have fun and enjoy myself out there while I still can. Lupus has pretty much taken away any chance I had of playing in college and that was a hard bullet to bite. But I've come to accept it. I've realized that this (his final days at Lake Zurich) is what I'm going out on, so I want to try to be as positive as I can about it."

According to Simon, Johnson literally never complains. His heart, determination and attitude has been an inspiration to everyone from his coaches to his teammates to his family and friends.

"We are extremely proud of Jordan and how he's handled this whole situation," said Johnson's mother, Marta, whose own mother has suffered with Lupus for the last 25 years. "I sometimes think I struggle with this more than he does. I could learn from his attitude and positive outlook."

But Johnson, a talented, award-winning artist and animator who plans to major in graphic design next year at DePaul so that he can be near his family and doctors, knows that keeping a stiff upper lip and his spirits high will only get tougher as the end draws near.

He has just a few more weeks of baseball left. For good.

"I don't think it's hit me yet that in the next 10 to 15 days baseball could be over for me forever," Johnson said. "When that hits me, I know it's going to hit hard.

"That's why I try to make every game I play now a game that I'm going to remember in some way."