Marion High senior with spina bifida gaining independence

MARION — Marion High School senior Max Stancel-Hess earlier this year celebrated putting on his shoes for the first time by himself.

This was a “huge accomplishment” as a person with spina bifida, a birth defect in which an area of the spinal column doesn’t form properly, often resulting in damage to the spinal cord and nerves, Stancel-Hess said.

“To gain a little bit of independence is a real victory for me,” said Stancel-Hess.

Stancel-Hess, 18, is looking forward to his next move toward independence as one of 191 students graduating from Marion High School at 6 p.m. May 28 at the high school.

“I feel like everybody who has a disability — there are times where they feel upset with life, dealt a bad hand, and I felt that way, too,” Stancel-Hess said. “I’ve come to terms with my disability. It’s a part of me.”

Even so, he wishes people would see him as “more capable.”

“Sometimes I think people just see a wheelchair and don’t see the person,” he said.

Stancel-Hess is going to Kirkwood Community College this fall. He is trying to make a decision between studying library science or manufacturing — which he admits are two very different career choices.

Stancel-Hess’ interest in library science is inspired by his grandmother, Deb Stancel, who read to him when he was a child. His interest in manufacturing is inspired by his grandfather, Dennis Stancel, who Stancel-Hess said is a “jack of all trades.”

Stancel-Hess’ grandparents are his primary caregivers. Together, the three of them are learning how to provide him the best care while still helping him gain independence.

“You can be too helpful to the point you’re hindering him from learning. There’s no rule book for raising any kid,” Dennis said.

When he was just hours old, Stancel-Hess had to have surgery. “The first time I ever saw him, he had these tubes coming out of everywhere. I remember my heart dropping down in to my stomach. I fell in love,” Deb said.

Together, Stancel-Hess and his grandfather have installed a handicap-accessible shower and other home projects.

One of the most memorable is creating an American flag out of red, white and blue Iowa license plates. It took years for them to collect enough license plates to make the 6-by-4 feet flag, and Dennis isn’t sure how many they used. The hardest license plate to find was the red one, which was made in Iowa for one year in the 1960s, Deb said. They predominantly purchased them from antique stores.

Stancel-Hess also is learning to drive a car with hand controls, and how to cook.

“Now that I’m getting more independent, I hope to live on my own someday. I am more comfortable with that idea,” he said.

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