Tribune/Nathan Orme - Gruen Von Behrens has had 34 surgeries to remove cancer from his mouth, which was caused by chewing tobacco starting at age 13. Von Behrens just concluded a swing through northern Nevada presenting his story to local schools.
Now, imagine going through it all after doctors tear your face apart.
That is what it was like for Gruen Von Behrens. At age 13, the Illinois native started chewing tobacco. By age 17, his face had been overtaken by cancer and to save his life his entire jaw and half his tongue had to be removed.
Talking about choices, consequences and appreciation for life, Von Behrens, now 32, has spent the last several weeks visiting Washoe County schools with his story. The international motivational speaker concluded his northern Nevada visit on Friday with two lectures at Sierra Nevada Job Corps (SNJC), addressing several hundred students and bringing his area total to around 5,000 people reached by his message.
"I hope after you see this it gives you inspiration to stop so you don't have to go through this," he said.
Growing up in a small, rural town, chewing tobacco was part of the culture around Von Behrens. He liked the way is tasted and the way it made him feel. His own uncle and grandfather chewed it, he said, and they wouldn't give him something on purpose to hurt him. But they did.
The students listened attentively as Von Behrens spoke Friday morning — partly because of his compelling story, partly because it was a challenge to understand him. He told them that after 34 surgeries, half a tongue and a lingering case of laryngitis, his words wouldn't always come out clearly, but if they stayed tuned and listened carefully they'd get his message.
About half the students in the room raised their hands when he asked who currently smokes. A few more said they chewed tobacco. After 15 years and all he has been through, he said later, he still craves the chew.
"If I stood up here and said everybody who uses tobacco products is bad, I'd be a hypocrite," he told them.
The effects of his habit started as a small white sore on his tongue. The spot grew until eventually his tongue split in half. He hid his problem as long as he could, first from his baseball coach because he didn't want to get kicked off the team and ruin a promising future in the sport, but more importantly he hid it from his mother. When she had enough of his excuses for not eating and constant drooling, she took him to the doctor. The problem was she took him to a dentist to have his wisdom teeth pulled. The young Von Behrens was only able to hide his mouth until the moment the dentist came at him with laughing gas. Then, he finally had to reveal his secret.
"I never saw that woman cry that way," he said remembering his mother's reaction.
The situation didn't get any better for his mother, who knew her son's slim chances for survival. Oral cancer kills about half its victims within five years because it is often discovered too late, according to the Oral Cancer Foundation.
Numerous surgeries and radiation followed. He shrank from 190 pounds to 130. The radiation was so intense that it rotted his teeth and at age 19 he had to get dentures. It also burned his skin so badly that it would peel off when he scratched. To reconstruct his jaw, doctors took his entire fibula from one leg and some flesh from his torso.
"I had gone from the person people looked up to to the person people look at, stare at, whisper about as I go by," he said.
Von Behrens has been cancer-free for eight years and although he now has a wife and two children who appreciate him for who he is on the inside, many still can't get past his disfigurement on the outside, he said. Von Behrens said he knows that if he walks into a store, a little child will see him, hide behind his mother, pull on her pant leg and ask her, "Why does that man's face look like that? Why does he look like a monster?"
He doesn't blame them. The first time he saw himself after surgery, he hated the mirror, hated the doctors and most of all hated himself.
"Living this way is not fun," he said. "Everywhere I go people look at me, stare at me, point at me."
Today, Von Behrens confidently and humorously talks to young people all around the United States and Canada about his experiences. As much as he preaches against tobacco use, he also preaches love and appreciation for parents, friends and others.
Gwen Curtis, a nurse and tobacco cessation specialist for St. Mary's Regional Medical Center, has been with Von Behrens for most of his visit to Nevada. She said one morning at breakfast the restaurant's hostess came up to them and said her daughter had just heard Von Behrens talk at Dilworth Middle School. Recalling his plea to children to express their love to their family, Von Behrens asked the hostess if her 14-year-old daughter said she loved her. After an initial dumbfounded look, the hostess said, "Oh my gosh, yes she did."
"I have heard this thing 15 times and I just cried again," Curtis said of Von Behrens' speech.
After his talk at SNJC on Friday, some students took Von Behrens seriously while others lit up cigarettes on their way out. By contrast, Curtis said she saw a teen boy at the Boys & Girls Club throw away his cigarettes upon hearing him talk.
Sharon D’Antonio, who runs the anti-tobacco programs at SNJC, said many of the students there begin smoking at the school because they are away from home for the first time and under a lot of pressure. SNJC provides job training and a GED program for youth who are having difficulty in regular school. She said the students at SNJC are no different from other teens who start using tobacco to cope with stress and the school is working to reestablish its peer-to-peer anti-smoking program.
Curtis and St. Mary's grants director Susen Speth-Briganti said Von Behrens' visit has been paid for by a grant from Nevada's share of the Tobacco Master Settlement Agreement, reached in 1998 between the four major tobacco companies and the attorneys general of 46 states to cover costs from smoking-related illnesses and pay for prevention programs. However, they added, after the recent special session Gov. Jim Gibbons put the state's $2.872 million anti-tobacco settlement money for fiscal year 2010-2011, which starts in July, back into the general fund to help cover the budget shortfall.
"We're going to have to be a little more creative” in finding funds for anti-tobacco programs such as Von Behrens’ visit, Speth-Briganti said.
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