Story by Peyton Witzke. Video by Olivia Johnson. Photos, graphic by Halle Marr.
Pulling apart a tube connected to the cannula, the nurse quickly shakes out the excess liquid and does her best to clean and dry the inside. When the nurse twists the tube back into place, Levi Bauer is able to continue explaining his daily routine softly once again.
“I have medical care throughout the day and that’s the first thing I do every day,” Bauer said. “I get out of bed, I hang out for awhile in my room, then I have medical care again and then I do homework. Next I go to classes, meetings, I hangout with my friends, have medical care again and then I just hang out for the rest of the day. I play games and watch Netflix. Right now I’m watching Frasier — hilarious!”
Levi Bauer, a 20-year-old sophomore at Bethel University, is majoring in human resources for business and, due to his love for the Vikings, pursuing a minor in athletic coaching. Bauer is most often recognized at Bethel as the guy who is zooming down the halls in the BC commons or Kresege courtyard with a monumental grin. Bauer was diagnosed at birth with X-linked myotubular myopathy — a rare genetic neuromuscular disorder that causes extreme muscle weakness, developmental problems and respiratory distress. An expert at operating his motorized wheelchair, Bauer has a nurse struggling to chase after him 24/7 for medical care.
“The best advice I’ve ever received was from my mom,” Bauer said. “She told me my whole life, ‘never feel sorry for yourself because if you do, you’ll demote yourself and you won’t be able to think you can do anything.’ That has really helped me know who I am.”
Bauer is part of a rare group of myotubular myopathy patients who can move their arms and hands. When he was younger, Bauer’s mom completed five to eight hours of therapy with him every day and deep tissue massage therapy with him every few weeks — something he says is the reason behind his mobility . In 2013, Bauer, his brother Alex — who has also been diagnosed with myotubular myopathy — and their mom attended the CNM/MTM support conference in the Twin Cities. The conference focused specifically on myotubular myopathy patients, the available resources for them, how to build strong relationships within medical boundaries and the newest research. After roaming around the conference all day, the Bauer brothers realized they were the only ones who had any range of motion of their arms and hands.
“Going to this convention helped me realize that if I didn't have my mom, I don’t know what condition I would be in right now,” Bauer said.
After attending the CNM/MTM conference and realizing the importance of giving back, Bauer started getting involved in an organization called the Disabilities Awareness Group at Bethel.
“I understand what it’s like for other people who have disabilities and I want to help them by spreading awareness,” Bauer said.
Bauer is often the first one to sign up for DAG commons tables, where members reach out to the student body for upcoming events. He is actively involved in order to give back to the Bethel community and to those living with similar conditions.
Bauer also finds it important to give back to his closest friends by supporting them in everything they do. One of his favorite ways to support his friends is by attending their athletic events. In fact, Bauer has not missed a single volleyball, basketball or football home game this year. One of his closest friends is sophomore Katie Lubben, a setter for the Bethel volleyball team and Levi’s personal homework helper. Lubben started working for Levi during their freshman year, but the pair have been inseparable outside of the classroom as well.
“I think he shoots for the stars and that’s what we all should be doing,” Lubben said.
In return, Bauer’s friends support his involvement in DAG by attending events. However, his biggest supporter is his mom who, at the end of the day, reluctantly hands over the care of her son to his many nurses..