Von Schaumburg maintains a champion’s perspective on ALS

Eric Von Schaumburg has not lost his sense of humor.

During a phone conversation he laughs about some of the funny memories during Schaumburg’s 1999 football season, when he was a starting free safety on a team that lost to Naperville Central in the state championship game. Von Schaumburg and his younger brother Josh also bust each other’s chops about their high school athletic careers.

“You’ve got to have fun with it,” Eric said of his life. “It keeps you going through the day.”

Because a not-so-funny thing happened just five months ago to change how Von Schaumburg lives every day. At one point, he is asked what he once knew about baseball legend Lou Gehrig.

“I knew he had a horrible disease and I knew about his famous last speech at Yankee Stadium,” Von Schaumburg said of Major League Baseball’s record-holder for consecutive games played before Cal Ripken Jr. “I don’t even think I knew Lou Gehrig’s Disease was ALS and that it was horrible.”

Now he does.

Just two weeks before his 30th birthday, after trying to figure out why he was suddenly having trouble speaking, Eric Von Schaumburg learned he was linked with the man who proclaimed himself “the luckiest man on the face of the earth.”

Von Schaumburg didn’t exactly see it as luck when he went with his mom Debbie and girlfriend Lindsay for an appointment with an neurologist on June 19.

“That’s when he dropped the bombshell on us,” Von Schaumburg said of being told he had ALS. “I was just numb and emotionless the whole time, while they were sobbing, crying and consoling me. I pushed them away.

“I was just numb for about three days, no feelings, nothing. An out-of-body experience for sure. My friends and family were all equally stunned.”

Then Von Schaumburg quickly drew upon the fighter’s mentality he always displayed on the football and baseball fields at his old high school. He was going to “Fight Like A Champion,” the slogan adopted by this year’s Schaumburg football team in his honor.

And tonight, at the school’s final regular-season home game at 7 p.m. against Palatine, Von Schaumburg will be honored as a school and community will continue to try to help him in his fight with ALS.

“He’s one of the toughest kids I’ve been around,” said Schaumburg football coach Mark Stilling, who helped organize the event with his wife Jami. “He’s just tough. He wouldn’t back down from anybody.”

He’s not about to back down from what he’s facing now.

Life takes a dramatic turn

Sports were always a big part of Eric Von Schaumburg’s life. He played for his father Bob in travel baseball and started playing football in eighth grade. His one regret is giving up basketball after his freshman year since his buddy Mark Pancratz led Schaumburg to the state basketball title when they were seniors in 2001.

But he was playing a big part as a starter on a football team that got rolling in the final third of the 1999 season and wasn’t stopped until it reached Champaign. Von Schaumburg had 5 tackles in a 56-31 Class 6A title-game loss to Naperville Central, which was quarterbacked by Houston Texans’ two-time Pro Bowl tight end Owen Daniels.

Von Schaumburg helped lead the Saxons to a perfect regular season in 2000 and considered continuing his football career. Head coach Tom Cerasani even got him a preferred walk-on opportunity at Northwestern with coach Randy Walker, who died in 2006.

“But, I knew I wouldn’t be playing and my dad famously said to me, when considering the cost differences of Illinois vs. other schools,” Von Schaumburg said, “’You can go to any Big Ten school you want ... as long as it’s U of I.’”

That decision put him on track to success at Mesirow Financial in downtown Chicago, where he has worked for eight years and was promoted to a vice president’s position earlier this year. He had bought a condo on Michigan Avenue near Grant Park in 2008, had a wonderful girlfriend and was still working out regularly even though his days of playing football and basketball ended after three ACL tears.

Life was good.

And then one night in early March everything started to change. Von Schaumburg’s mom and sister Sarah were teasing him about slurring his speech after drinking a couple of beers.

The speech problems became more pronounced. Some people thought it was related to the stress of a job where he was talking constantly. He was struggling to get through business presentations.

“I thought I was going insane trying to determine if it was real or in my head,” Von Schaumburg said.

Initial trips to neurologists didn’t produce any answers. Bloodwork and MRI’s on his spine and brain were coming back normal.

Then came the shocking news that he had ALS, the progressive neurodegenerative disease which affects the nerve cells in the brain and spinal cord. Von Schaumburg’s has a bulbar onset, where his speech, swallowing and chewing are affected, but so far his limbs are not.

Because of his financial background, Von Schaumburg crunched the numbers where only 4 percent of people with ALS are diagnosed before 30, only 20 percent have bulbar onset and 15 percent have an ALS gene in their family.

He calculated the odds at 1 in 141 million. To put it in perspective, the odds of winning the Oct. 19 Powerball jackpot of $186 million were 1 in 175 million.

“I was depressed for about three weeks and then I realized ... this isn’t me,” Von Schaumburg said.

An outpouring of support

It wasn’t long before friends and family started to lend their support to Von Schaumburg.

Stilling was a sophomore coach at Schaumburg in 1999 and came up to the varsity to work with the defensive backs in the postseason run. He and his wife started to put things together through the football program to help organize the events surrounding tonight’s game.

“Coach Stilling and his wife have been incredible,” Von Schaumburg said. “I’ve had to tell him multiple times to stop worrying about it and go focus on the games.”

There will be a raffles and items auctioned and the Village Tavern Grill in Schaumburg will donate 20 percent of every bill all day Friday to Von Schaumburg’s medical fund. A number of his former teammates, coaches and friends are expected to attend the game

More than 250 people showed up for a fundraiser in Chicago in early September and a barn dance fundraiser is planned for Dec. 7. (For more details on events and how to donate to his fund, go to the website fightlikeachampion.org.).

The people at Mesirow, particularly division head Maureen Flood, have been tremendously supportive and paid to set up a second office at Von Schaumburg’s condo, so he can work from home three days a week. His girlfriend Lindsay has stayed with him every step of the way as has his family.

“Three-quarters of the tears I’ve cried in the past five months have just been pure joy from the incredible acts of kindness,” Eric said.

“It’s brought our family so much closer together,” Eric’s brother Josh said, “and we were a really close family to begin with.”

Josh has been invaluable with his support. The 2011 Notre Dame graduate’s information technology skills have been key in their trips across the country, from the famed Mayo Clinic in Minnesota to see a doctor in Boston this week, as they try to find help for Eric in his battle.

They are looking into a different clinical trial possibilities, but those come at costs in the tens of thousands of dollars a year since they are not FDA approved and not covered by insurance. They also come with a level of uncertainty.

“The scary thing is we could be doing all this travel and be given a placebo,” Josh said of a medically ineffective treatment. “That’s tough.”

The road ahead

Eric Von Schaumburg can trace his hatred of losing at anything, even the card game Euchre, to his background in sports.

“So you can imagine how hard I will be fighting,” he said. “No one loves life more than me, so I will fight to keep that as normal as possible.”

His speech, chewing and swallowing will continue to deteriorate. Stressful situations make his speech worse and his eating has been affected. Doctors recommend 10 hours of sleep a night and it takes him an hour to get going in the morning.

The life expectancy of ALS is two to five years, but Von Schaumburg said there are some rare cases where it stays confined to the bulbar stage and doesn’t spread to the limbs. His biggest concern is his condition leading to the suffering of those close to him.

“I am concerned about the ultimate outcome of ALS ... which is your brain, smell, eyes and senses are all fully functional, but you become a quadriplegic who can’t speak,” Von Schaumburg said. “You are essentially trapped inside your own body. That’s very scary to think about.”

But Von Schaumburg said he would “be thrilled” if he could fight ALS for 17 years like Jim Payne, the father and grandfather of former Schaumburg basketball stars Kent and Cully Payne.

Von Schaumburg believes he will lose his ability to speak in the next year or two. But he joked that he has looked into synthetic voices where he can still be as vulgar as he wants.

“Eric’s attitude has been incredibly motivating for all of us,” Josh said.

Because Eric Von Schaumburg now sees this as an opportunity to alter the lives of his others with his will to overcome the ultimate in adversity. And he knows that laughter, while not a cure-all, is a much more effective medicine than tears.

So, when you see him tonight or down the road, make sure to laugh for him, with him and even at him. That’s what Von Schaumburg wants.

“I was offended when a friend sent out an email making fun of all of us and it didn’t include my ALS,” he said. “I required him to respond with three ALS jokes and he did.

“You have to keep a sense of humor about it all and just enjoy life. It’s way too short to be miserable or sit around not doing something fun.”

Ÿ Marty Maciaszek is a freelance columnist for the Daily Herald who can be reached at marty.maciaszek@gmail.com