By Cesareo Contreras
In 1999, when he was 4 years old, junior Sam Klobucher became gravely ill.
What started as a high fever from a virus quickly became more serious when two weeks after getting sick, Sam collapsed.
Confused and worried, Sam’s family took him to the hospital in search of a diagnosis and a treatment plan.
What followed was a six-month ordeal in which Sam and his family went from hospital to hospital in search of answers and finding none.
Even after numerous medical tests, a diagnosis eluded doctors and Sam’s condition worsened. He began sweating profusely and had uncontrollable spasms.
“He couldn’t sit up. He couldn’t use any part of himself,” said Sam’s mother, Diane. “He was just in a terrible, terrible state, but there was nothing we could do.”
Doctors treated most of Sam’s symptoms with extensive physical, occupational and speech therapies. And while therapy did help – he was able to regain some movement – Sam wasn’t given a proper diagnosis and prognosis until several years after his collapse.
Yet it wasn’t the doctors who pinpointed his disorder.
It was his mother.
After years of trying to figure out her son’s condition, Diane came across a story similar to Sam’s while visiting the Dystonia Foundation’s website.
“Suddenly, within 48 hours, they became severely disabled with dystonia but [kept] their cognition,” she said.
The diagnosis?
Rapid-Onset Dystonia-Parkinsonism (RDP) – Sam’s condition.
An extremely rare movement disorder, RDP has left Sam unable to communicate verbally and with limited movement of almost every part of his body.
Although Sam’s disorder is unlikely to get worse, it is also unlikely to get better, Diane said.
In an online article published by Wake Forest School of Medicine, Allison Brashear, professor and chair of the Department of Neurology at Wake Forest Baptist Hospital, said for now, RDP “is permanent and untreatable.”
“This particular disease is heartbreaking because it typically affects young individuals and it comes on abruptly,” she said. “I’ve had stories where people are running a marathon and by the end of the marathon, they can’t walk, they can’t talk and they can’t swallow.”
To move, Sam uses a custom-made blue motorized wheelchair. Attached to it is Sam’s Tobii – a voice machine that allows him to communicate with his peers and professors. With Sam is a hired student aide who carries his books and helps him traverse the campus.
Although the disorder has taken a toll on Sam’s body, it hasn’t affected his mind.
Sam has always been smart, and the disorder did nothing to change that, said Diane.
“He was reading before he was 2,” she said. “When he went to preschool, when the teachers would do arts and crafts and they would lay newspapers on the table, Sam would be reading [the newspaper] on the table. ... He wasn’t interested in arts and crafts.”
Sam received his first talking device when he was in the fourth grade and received his first motorized wheelchair when he was in sixth grade. In elementary and middle school, he was given two awards from the Easter Seals of Massachusetts, a non-profit organization whose goal is “ensuring that children and adults with disabilities have equal opportunities to live, learn, work and play,” according to their website.
In 2004, when Sam was in fourth grade, the president of the organization visited Sam while he was in class. From what he saw, the technology Sam was using was far too limited.
At the time, Sam was using a voice machine with a 26-key keyboard that is similar to the one he uses now.
“Sam needed, Sam wanted much more to communicate,” Diane said. “They changed it so he could have a much more broad keyboard with 52 keys.”
After Sam was given a proper setup, he said communicating with his peers and teachers became far less “tedious” and he was able to hold a conversation.
Sam at FSU
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As a history major at FSU, Sam excels academically.
He took his first history class at the University while he was still at Framingham High School. And today, he is a member of Phi Alpha Theta, FSU’s National History Honor Society.
While Sam does well in the classroom, he does face some challenges.
For one, the campus isn’t as accessible as it could be.
Since the University is on a hill, going from class to class is a hassle for Sam.
“It’s not the most accessible place to get around,” he said. “It is an old campus, not really built with disabled students in mind.”
Because he is a history major, most of Sam’s classes are in May Hall. Entering the building can be difficult, as the back entrance doors are heavy and don’t have handicap door operator buttons.
“They are double doors and they are very heavy and don’t open very well,” said Diane.
The elevator and bathrooms are also not ideal – they are small and a tight fit for Sam and his aide, he said.
Also, since the stalls are upstairs, he’s forced to use the elevator whenever he has to use the bathroom.
“So, I avoid using the bathroom there, but it is too hard to get to the student center and some other buildings because of the steep hills,” he said. “I have to take detours if I want to get there.”
Sam doesn’t just have problems in May Hall.
Last semester, he missed two periods of a class he had in the library because the elevator broke down on two separate occasions, Diane said.
He wasn’t sent an email notice about the incidents, Diane said, so he came to campus and was unable to go to class.
Maureen Bagge Fowler, FSU’s environmental health and safety coordinator, said the elevator in the Whittemore Library was broken for several days last year.
She said it’s hard to determine the level of repair the elevator will need until the elevator company FSU contracts comes to campus to determine the extent of the problem. Because of that, it’s hard to know if they need to notify the individuals who require the elevators be in service.
“It could be a simple switch break, which could be a five-minute repair, or it could be out for a week. If it’s out for a week ... we will notify, but if we don’t know if it’s going to be out for a few days, then we don’t notify, because we assume it’s going to be fixed,” said Fowler.
Regardless, Patricia Whitney, FSU’s assistant vice president of facilities, said if the University “dropped the ball” in regards to informing students about the broken elevator in the library, when she meets with her supervisors, she said she’ll re-emphasize the University will “make sure we’re notifying people as quickly as possible.”
Diane said, “Because he has several classes in the library, if the elevator is broken, it’d be nice to know in advance. ... It’d be nice to try and fix the elevator as soon as possible.”
One of those classes was English professor Claudia Springer’s Film and Literature course.
Sam “the film buff”
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In addition to being a history major, Sam is a film studies minor. As any film studies concentrator at FSU would know, Springer teaches all the film classes here at Framingham State.
Over the years, Sam has taken a number of courses with her, including The Language of Film, Film History from 1960 to the Present and Film and Literature. This semester, Sam is enrolled in Film History from 1895 to 1960.
Having extensive knowledge of both contemporary and classic films, Sam “always contributes very insightful comments” during class discussions, she said.
“Sam is a phenomenal student,” Springer said. “He’s a film buff, which makes it a pleasure to have him in my classes.”
Sam’s favorite films include classics such as “Casablanca,” “Field of Dreams,” “It’s a Wonderful Life,” “The Godfather” and “The Godfather Part II.”
Keeping his love of history in mind, Sam says he prefers films based on facts and likes films made in the states more than films made internationally. That being said, Sam does watch some fantasy and enjoys the Harry Potter series in particular, he said.
Hardworking, smart, and thoughtful would be accurate descriptors of Sam, Springer said.
Sam the history major
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When it comes to specific areas of history, Sam is particularly interested in American history.
If Sam had to pick his favorite era, he’d probably choose the 20th century, he said.
And if he had to pick his favorite historical figure, he’d pick Franklin Delano Roosevelt, the 32nd president.
“I liked how he handled both the Great Depression and World War II, two of our country’s greatest crises,” he said. “I liked his New Deal programs, especially the Social Security Act, which laid the groundwork for the modern welfare system in the U.S. providing aid to the elderly, disabled and children.”
Although Sam has taken courses with many history professors at FSU, some have influenced him more than others.
When asked who are among his favorites, Sam was quick to mention Lissa Bollettino, his advisor, who he said has always been “very accommodating.”
Sam has taken three courses with Bollettino, most of which focused on American history, U.S. History Since Reconstruction, Historical Research and Writing and Colonial America.
It didn’t take Bollettino very long after meeting Sam to recognize how committed he is to doing his best academically, she said.
While Sam was in Bollettino’s U.S. History Since Reconstruction class, he was assigned an oral
presentation on a primary source – a standard task for all students in the class.
“I wasn’t entirely sure how this was going to work for Sam,” she said.
As Bollettino soon found out, “Sam knew exactly how it was going to work for Sam,” she added.
Days leading up to the assignment, Sam met with Bollettino in her office and laid out his presentation and PowerPoint.
“He had a beautiful presentation already set,” she said.
On the day of his oral report, Sam set up a prerecorded speech and just pressed play “and his whole presentation unfolded,” she said.
“Notwithstanding his limitations on communication, or his need to use a computer or what have you to communicate, he did one of the best presentations in the class and it was obviously a model others were looking to follow,” she said.
Several weeks after Sam gave his presentation, another student in the class went to Bollettino asking for some assistance with her own presentation.
After Bollettino gave her some advice, the student ended the chat by saying, “Well, I just hope mine will be as good as Sam’s.”
Sam’s accommodations
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To ensure Sam can contribute during class discussions most effectively, Springer and Bollettino, like most of Sam’s professors, send him discussion questions via email before class and let him record lectures.
“It’s easy to accommodate Sam,” Springer said. “He always comes to class prepared, which makes it really rewarding.”
According to LaDonna Bridges, the director of the Center for Academic Success and Achievement (CASA), Sam is a proactive student. He doesn’t wait for CASA to reach out to professors about his needs. He takes the first step in establishing his accommodations for a particular class.
Typically, students with CASA accommodations get four hours and 30 minutes to complete a Gnal exam – an hour and a half longer than the standard three.
Professors often let Sam take tests overnight, she said.
“For Sam to communicate it takes a long time for him to get all of his thoughts on paper,” Bridges said.
Sam will write the answers to the tests on his speech machine and a family member or an aide will transcribe it onto the printed page, she said.
“They allow him to advocate for himself, but they are there to help with that,” she said. “There’s a lot of integrity in Sam – himself – and in those assisting him.”
Although most of Sam’s professors are accommodating, there have been instances when Sam wasn’t treated as fairly as he should have been while in class, Diane said.
Because it takes a few moments for Sam to respond to questions – since he needs to input sentences on his voice machine – there have been instances when professors wouldn’t give him enough time to fully type out something. They would count down the number of seconds Sam had left to come up with an answer, Lombardo said.
Sam said, “It bothers me somewhat when in class, professors don’t ask me directly about assignments or classwork but instead ask my aide. ... The best way I can participate in class discussion is if the professor emails me in advance the class discussion questions, then I can answer in advance and have my answers typed and loaded on my speech machine.”
It’s a problem Sam has had for most of his life – people making the assumption that just because he is physically disabled, he may have trouble articulating his thoughts or that he is mentally incapable of speaking for himself.
“It’s frustrating,” Lombardo said. He’s in his 20s – “he doesn’t need someone to speak for him.”
While working with Sam, some of Lombardo’s daily tasks included getting his books out of his backpack, helping him use the bathroom and relaxing his muscles when they stiffened up. Her job was never to do any of the actual classwork – that was all Sam.
What’s next
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Looking forward, Sam, like most college students, said he is unsure of his job options. Ideally, Sam wants to do something in the entertainment industry, he said.
“I hope to be a writer for a television show that uses popular culture references and witty dialogue, such as the television show ‘Gilmore Girls,’” he said.
His professors aren’t too worried about his job prospects, however.
In Springer’s mind, Sam has several job options ranging from screenwriting to film reviewing and column writing.
“Sam is an excellent writer and I can see him writing,” she said. “He’s taking screenwriting this semester and I think that’s an avenue he might want to pursue.”
According to Bridges, Sam can do “whatever he sets his mind to,” and as of now, thanks to his drive and dedication, Sam’s future seems bright.
“I don’t see his disability getting in the way of what he chooses to do,” she said. “I don’t see that limiting him at all. ... His persistence is pretty remarkable.”