For many of us, telling one's own story is fundamental to the human experience. When that ability to tell your story is hindered by mental or physical limitations, the story falls to others to tell.

One St. John's University graduate witnessed his uncle's struggle to tell his own story after a rare disease severely limited his ability to communicate.

So using a time-consuming interview process, theater student Brandon Anderson aimed to bring his uncle's story to the stage and, in the process, learned what it means to respectfully give voice to a person with disabilities.

Anderson presented that story Thursday and has a second performance Friday at the St. Cloud Public Library with the short play "That's Just The Way It Is."

Terry Anderson, 53, was diagnosed with tuberous sclerosis, a genetic disease there is no treatment for, in his teens. He was told he wouldn't live past age 24. Over the course of his life, he's lost control of many body functions, including the ability to walk, speak and eat. He spent years in a nursing home before being moved into a group home with people his own age. Now he communicates with his family using a letter board, spelling out words a letter at a time.

Brandon, a Becker High School graduate, is working on the play as part of his master's program in theater. He is researching all aspects of portraying a person with disabilities on the stage.

Brandon's drama teacher, Jan Lefebvre from Becker High School, helped with the play, giving advice and playing a small role as a psychologist in the two-person show. She said the story accurately shows Terry's experience.

"It also captures the victory over still living, choosing to live, choosing to find purpose in spite of all that. So it's not a depressing play. It's a play of victory," she said.

And yes, the song "The Way It Is" by Bruce Hornsby and the Range is featured.

Brandon Anderson uses theater to tell the story of his uncle, Terry Anderson, who was diagnosed with tuberous sclerosis at a young age. St. Cloud Times

Opportunity strikes

As an undergraduate at St. John's University, Brandon was interested in telling Terry's story, but time constraints wouldn't allow him to work on it as a senior project.

So before he left for graduate school in the United Kingdom, he asked Terry if he would be willing to participate. There he would have a whole year.

With the help of Brandon's parents and Skype, Brandon interviewed his uncle about his life.

Through the interview process, Brandon and Terry went over the pivotal points in Terry's life. They include playing baseball during his childhood, getting diagnosed, coming to terms with his disease and embracing life.

The project also uses multimedia, including a skydiving video, photos and even news footage from the Terri Schiavo case in 2005, which played a role in Terry's story.

"So I wanted to make it as real as possible, not stray away from what he told me. I'm putting a voice to the work and articulating what he wants," Brandon said.

"It was a long process. I think that's why I knew I needed to start right away in September," he said. He also had another challenge: He had never written a play before.

The show is set in a counseling office. Terry is prompted to think about his life through the counselor's questions.

Through pictures and acting, Terry's memories are staged, followed by Terry summing up that episode in a few words spelled out on the letter chart.

The goal is to express the rich life in Terry's head even though it is difficult for him to communicate that.

The Thursday and Friday shows at St. Cloud Public Library are a first go-round for Brandon. He's taping the performances so he can evaluate his performances and pick areas to further develop. Then he'll repeat the process.

"It's like a lab test, but in art form," he said. He said he wants to make the production into a full-length play instead of 40 minutes.

He'll also take advice from the audience.

He had always been intrigued by acting — the body and movement. He was interested in how an able-bodied actor could accurately portray someone with a disability.

Research work

Brandon said there's not a lot of research on the subject that he's found. His primary research were interviews by the media with actors.

That included RJ Mitte, who plays Walter White Jr. in "Breaking Bad." The actor has cerebral palsy, but through training and therapy had regained function in his legs. For the TV show, he had to relearn what it was like to walk with the crutches Junior uses.

Brandon also read about Daniel Day-Lewis, who played a man with cerebral palsy in "My Left Foot."

"I think the biggest challenge for me, I was very emotionally involved. I know this person. I don't want to make him feel bad for who he is," he said.

So it was tough to get himself to go beyond what was polite, so he could practice the sounds he would have to make to portray Terry.

"I feel bad making these sounds, but for Terry, they're sounds of joy. To an average person, they're scary, or they kind of brush it off to the side. It's not something society wants to hear or see."

"This is a person. This is who they are. There's no shame in that. It should never be shameful if this is how a person is," he said. "There are layers that we need to look past, maybe physical or whatever. ... There's somebody in there that exists with feelings and emotions."

The show also requires Brandon to convey differing degrees of abilities. In some memories, Terry has more function than others.

"I think where the challenge lies for myself, I have to go in and out of physical disability multiple times," he said.

Lefebvre met with Brandon early on to give him feedback about the play, and he asked her to step in for the minor role as a psychologist.

"I thought it was a great idea. I very much like Brandon. Brandon's always had ... just really one of the purest hearts of anybody. ... He was the right guy to do this project," she said.

She knew the play would be a great challenge.

"Again, that's very Brandon. He likes to learn and get better and improve all the time. ... He has to take on the emotional, physical and even the ethical aspects of how to portray someone with handicaps in a respectable, dignified way. Plus, that's his uncle. He has a personal loving connection. ... That's risky, and brave," she said.

She said it's also brave on Terry's part to let "Brandon into his thoughts and letting him portray him. To give up some control to let him do that."

"Actually seeing (Brandon) put into words how somebody in his uncle's position must feel, I think he nailed it. ... It captures how this is a perfectly capable brain trapped in a physical body that does not participate," she said.

She had some advice for Brandon.

"As long as you're honest and respectful, you can't go wrong. But you can't overplay, and you can't underplay. ... And that's portraying anybody. That's how you can get true human understanding," she said. "He is giving a voice to someone who does not have the physical ability to speak anymore."

Before the first show, Brandon was a little nervous about performing it for the first time, with Terry never having seen it.

"I think some moments will be challenging for him to watch. And I just want him to know it's not there to mock him in any way. It's to show people in the audience what he's overcome as an individual. It's the obstacles that he's overcome that are so inspiring," he said. "I'm kind of excited to see what his reaction is. I just hope he likes it."

Terry Anderson's perspective

Editor's note: Terry Anderson answered using his letter board questions the St. Cloud Times gave to Brandon Anderson. Brandon interpreted and sometimes modified the questions, as he asked Terry.

How did you feel when your nephew asked you to participate in this project?


What does it mean to you to have your nephew ask to tell the story of your life and your physical disability?


How do you hope this play will enlighten audiences about your life and your physical disability?

Hope they understand my disability a lot more.

How do you hope this play will enlighten audiences about those who have physical disabilities?

(Pondered a lot.)

Do you hope it does enlighten people?


Do you hope people look at you differently once they know who are and where you come from?

Yes. I just want to make them happy.

Do you think the play will be able to communicate things to a larger audience about your life that you wouldn't have been able to yourself? How or what?

(Brandon said he and Terry agreed that Brandon wouldn't tell him anything about the play so Terry could come to the show and be surprised. Terry knew the play was based on all past interviews and all that information was fair game.)

Anything specific you are excited to share with people?

Nothing specific, but nervous to share my life story, but also excited. But he's afraid of what people might think.

How did you describe to Brandon what it feels like to gradually lose physical abilities so that he would be able to inhabit that in the play?

I lost my ability to talk first. Then I had my first crush Wanda, then my legs, then my ability to swallow. She knew I had a crush on her when I was janitor at the hospital.


What: "That's Just The Way It Is."

When: 4 p.m. Friday. Question-and-answer session to follow.

Where: St. Cloud Public Library, Mississippi meeting room.

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