The remarkably normal life of Jason Hoffmann
Jason Hoffmann graduated from high school in Indiana and then earned a degree in history from Purdue University. He moved to Aspen five years ago, and is currently the officer manager at a local paint shop. His wouldn’t be an extraordinary life, except that it was all done despite a body in revolt.Hoffmann was 9 when the symptoms first appeared. He was a normal fifth-grader, a little leaguer, “one of the best on the team,” he says. He was diagnosed with dystonia, a rare neurological disorder that causes ceaseless, uncontrollable spasms all over the body, especially the back and neck. His body began an endless and unstoppable “tug of war” between twitching muscles. By ninth grade he gave up baseball altogether. Now, he watches every game he can on television.
“I don’t go out much at night,” Hoffmann says. “But I’m really into sports. I watch sports on TV all the time.”For many, Hoffmann’s appearance is at first upsetting. His movement is wild and chaotic, as if he’s constantly fighting inner demons. His spasms have deformed his body and raised a hump on his back. His face contorts, as do his vocal cords, impeding his speech. But in the brief moments of stillness his body allows, a face appears, young, handsome, eager to be liked.”People relate my physical state to my mental state,” Hoffmann says. “People think that because I don’t look right on the outside I haven’t been through school, I’m not a normal person. I’m happy to explain to people. But until they know they can have a bad reaction to me.”For this reason Hoffmann hates change. After five years in Aspen he’s planning to stay. It’s a small town, and people know him. He’s often greeted by friends on the street. When he was hired by Aspen Painting Inc. four years ago, it was on a part-time basis. Since then, he’s worked his way up to an officer manager position.”All our customers appreciate him,” Aspen Painting owner Roger Moyer says. “His disability isn’t a disability for us. He’s just one of the guys.”
Hoffmann’s college education is clearly important to him; he’s an avid Purdue sports fan, and he can happily list every Boilermaker currently in the NFL. It wasn’t easy earning his degree in history – “I can’t write much without my hand cramping,” he says – but it was clearly worth the pride that came with it.”I have a college education,” Hoffmann often says. “I wish everyone knew that when they looked at me.”Hoffmann’s social life is curtailed by the exhaustion of a body in constant movement. He tried skiing, but “took a beating” and had to give it up. Occasionally he plays disc golf with friends in Carbondale. But mostly he spends his evenings and weekends at his Truscott apartment or at his aunt’s house in Aspen, where he lived for the first few years in town.”It’s the most amazing thing,” his aunt Heidi Hoffmann says fondly. “When he sleeps he’s completely still. It’s the only time his body rests.”Those who know him say Hoffmann is remarkably upbeat. He speaks easily and without embarrassment about his condition, even finding something positive in the hardship. His constant spasms, he says, mean that he burns thousands more calories than the normal person.
“I eat all day. I’ve got like zero body fat. I don’t have to worry about going on a diet,” he jokes.Hoffmann takes a cocktail of medications to help the spasms, a barrage that proves ultimately futile in its battle against a brain sending incorrect signals to the body. As a teenager, Hoffmann received botox injections directly into his neck. It was hoped the botox would calm the muscles. However, the shots, administered through the back of the throat, were painful and eventually led to a life-threatening infection.Recently, Hoffmann will tell you excitedly, a Denver-based neurosurgeon has pioneered work in deep-brain stimulation that might cease Hoffmann’s spasms altogether. It’s open brain surgery, which Hoffmann finds scary, but it could revolutionize his life.”I get pissed off with my body a lot. This surgery could make all the difference. It would be nice to not move anymore.”Eben Harrell’s e-mail address is firstname.lastname@example.org
Start a dialogue, stay on topic and be civil.
If you don't follow the rules, your comment may be deleted.