By Kylie Blanchard
Photography: Photos by Jacy
“Now faith is being sure of what we hope for and certain of what we do not see.” – Hebrews 11:1
AJ Marx has cerebral palsy, but he hasn’t let it stop him from living an active, faith-filled life.
“With my different abilities, I have to rely on God,” he says. “I believe that anything is possible.”
Born a “May Day surprise” and only weighing two pounds six ounces, he spent several weeks in the NICU with his family by his side.
“I think the reason I survived is that my mom would sit for hours and rub her fingers up and down my back,” he says.
A DEDICATED STUDENT
As AJ grew, he found an immense love for learning.
“I really enjoyed school because I got to learn a lot. I was curious about the world, and I still am,” AJ says.
With the help of paraprofessionals, adaptive equipment, and his Grandma Barb Norby, he developed into a dedicated student. He also enjoyed extracurricular activities, writing for the school newspaper at Horizon Middle School, and singing in the choir at Bismarck High School.
“I got to go to San Francisco on a choir tour my senior year,” he recalls. “I remember worrying about if I was going to be able to go. You can’t just decide to ‘go’ when you have physical limitations, but staff from Enable went with me, and a friend of mine, who is also in a wheelchair, and his father had the room next to us in case I needed help.”
That same year he also received an “Outstanding Vocalist” award from the choir.
While he hadn’t planned to go to college, AJ says as the time grew near, he kept receiving hints that it just might be part of the plan.
“I kept getting postcards for prospective students from the University of Mary. I finally said, ‘OK, God, I will do what you want me to do.’”
He started pursuing a degree in public speaking but switched to a major in theology.
“There were some people who said, ‘You won’t be able to make it in college because of the math requirement,’ but there was a wonderful teacher who helped me through statistics.”
AJ also had the help of classmates in notetaking and later received a special pen to record lectures. His Grandma Barb also spent many hours studying with him.
“She would come over and help me do my homework. Sometimes we would be up half the night. She would read my textbooks to me,” AJ says. “I tried to convince the school to give my grandma an honorary degree because she also worked so hard.”
AJ graduated with a bachelor of arts degree in Theology in 2017 and says his success was due in part to the support of others.
“I always felt God put different people into my life just when I needed them,” he says.
FACING CHALLENGES WITH FAITH
Living with cerebral palsy is challenging, and AJ has endured difficult surgeries and hospital stays but always leaned on his faith to help in his healing.
A Baclofen pump that administers medicine to relax the muscles has helped AJ greatly, but he has also endured pump replacement surgeries.
“This pump is inserted underneath my skin and attached to my spinal column and Baclofen relaxes my muscles so they are not so tight and I can move,” he explains.
In high school, AJ also had surgery to fuse his back due to scoliosis as well as surgery to put his hips back in the sockets.
“I had to have one hip redone because it didn’t stick,” he says. “I was in a cast for six weeks and ended up getting a class four wound that then needed to be treated, so I was in the hospital for a month lying on my stomach the whole time.”
During all of this, AJ kept up with his schoolwork, having his homework sent to the hospital and meeting with a teacher for an hour each day.
“When you have a wound or tragedy strikes you, God is there to heal you. He never gives up,” AJ says.
AN ADVOCATE FOR OTHERS
Advocating for those with disabilities has also been an important part of AJ’s life, starting in elementary school.
“I went to a hockey game and, (being) in a wheelchair, we had to sit down on the floor by the ice, which wasn’t always warm and comfortable,” he notes. “My dad and I talked to the arena manager and we convinced them to put a lift in so wheelchairs didn’t have to sit on the floor.”
His advocacy efforts also put him in touch with the city’s mayor regarding handicap ramps on street corners and access to recreation trails. He has even reached out to the president.
“I emailed President Obama about his health care bill and got a Christmas card from him,” he says, adding he also wrote to North Dakota Senators Heidi Heitkamp and John Hoeven when the health care bill was before the Senate to reduce Medicaid.
AJ has also been a long-time member of Self Advocacy Solutions (S.A.S.) of North Dakota and currently serves as president of the North Dakota chapter.
“We help people with disabilities advocate for themselves,” AJ says. “People from all over North Dakota are part of it.”
In 2010, AJ received a national “Yes I Can” award for his advocacy efforts, which he accepted in Nashville, Tennessee with his family by his side. In 2016, he was also awarded the Bobby Vogel S.A.S ND Self-Advocate of the Year award.
“I just want to tell people, don’t judge a book by its cover. We’re just like everyone else,” he says.
AJ has lived in his own apartment since 2014.
“I enjoy having my own place. I like being able to decide what I am going to do, but sometimes it is a challenge because you have to remember to do all the normal things like shopping, cooking, and cleaning.”
He also receives assistance from Enable program staff that visits his apartment daily.
“I can’t use the restroom, get dressed, or shower by myself,” AJ says. “And not everything is accessible, even in my own apartment. It is nice to have help sometimes.”
AJ also works at Pride Productions and says his employment is valuable in learning a variety of job skills.
For many years, AJ has been active in the annual Great American Bike Race (GABR).
“Cerebral palsy can be expensive,” he notes. “A power chair can cost as much as a new car and GABR says, ‘as long as there is a need, we will try to help.’”
Currently, AJ sits on the board of the community’s Lutheran Campus Ministry as a representative of his home church, Lutheran Church of the Cross.
“We are working on getting Lutheran students a place to meet at college campuses in Bismarck,” he says. “It is important for students to not forget where they came from and who they are ultimately following.”
At his church, AJ also serves on the Worship and Music Committee and has continued singing as a member of the worship team.
Although he doesn’t know what his plan is for the future, he says he knows God has something in store for him.
“I don’t know what is coming up next. I am waiting to hear from God; you never know what He has planned.
“Faith helps me look forward,” he continues. “I am a big believer in the Bible passage, ‘There will be no more crying, no more tears and you will be able to walk and not be weary’” (Isaiah 40:31).