Permanently, Yet Comfortably Seated

When Erick Sturm first met Ruben Alvarez, he immediately knew there was something special about him. What he didn’t anticipate is that years after their first meeting, he would make a feature film about Ruben’s life with cerebral palsy, and Ruben’s greatest challenge, caring for his young daughter Emily, who suffers from a serious and life-threatening condition. Together, the two have joined forces to tell Ruben’s story, to demonstrate the role of faith on his journey, and, perhaps surprisingly, to make viewers laugh. 

“Ruben’s just one of those guys where you immediately feel like you’ve known him for a while,” said Erick. “[He has] a very comfortable demeanor and a very positive attitude and you don’t even have to hear him say anything, you can just see it.” 

Cerebral palsy is a disorder that affects the muscles. Ruben requires a wheelchair to get around, and it is from a conversation the two had about Ruben’s wheelchair that the title of the film, Permanently, Yet Comfortably Seated comes. While the two were chatting about how the words used to define people with special needs have changed over the years from handicapped to disabled, Erick asked Ruben how he defined himself. Ruben’s reply was, “I’m just permanently, yet comfortably seated.” 

Little did Ruben know when he uttered those words that he had yet to face his greatest challenge. He and his wife Renee are the parents of three girls: Rachel, Sarah, and Emily. Emily was born with spina bifida, a birth defect where the backbone does not fully close around the spinal cord. The condition can be severe and life-threatening. Ruben and his family moved to Greenville five years ago to find a doctor who could provide specialized care for Emily, who has already had over 25 surgeries and is in her first year of middle school. 

In spite of the challenges he has faced in life, Ruben keeps a positive outlook. His faith in God plays a large role in his ability to find the good amidst the bad, and he says it’s also important that he is grateful for the things he has.

Ruben says, “When they asked me what did I want the movie to be about, what are the core values of it, it was faith, family, and friends, because it’s what got me to where I am today. Most people with a disability are not as fortunate as I am to have what I have: a family, a wife, children, and all that.”

Additionally, he says that humor is a tool that helped him confront and overcome challenges. 

“[Humor] means everything,” Ruben says. 

He first used humor as a child to prevent classmates from teasing him. Later, he learned it was a good icebreaker for helping him “disarm people in a good way. Humor has a way of making people feel comfortable around me.” 

Finally, he says that humor helps him confront his challenges: “One of the kids I work with in ministry said to me, ‘I don’t know where you get your strength from.’ I said number one, I get it from the Lord, and number two, I get it from my sense of humor because the alternative is to crawl under a rock and die, and I refuse to do that. So I have to find the humor in everything that’s going on around me.” 

When watching a film about a family’s struggles with cerebral palsy and spina bifida, viewers might not expect to laugh, but that is just what Ruben and Erick hope they will do, because laughter is an intrinsic part of Ruben’s story. 

“[Ruben’s] sense of humor is just awesome, especially when he talks about his own predicament,” Erick says. 

Ruben says, “We are striving to create a film that is first a comedy and entertaining because we want people to see my life and be entertained by what they see on the screen. And we hope to inspire them… and to give them hope… and ask them to examine what does faith look like in your life, what does that mean to you?”

According to Erick, who is both executive producer and co-writer, the script is nearly finished and filming will begin in 2016. 

Erick says that people with disabilities will be included in the work. “We have had and will have more people working on the project with disabilities: acting, behind the scenes producing, and associate producers as well.” 

Investors are still being sought to help fund the project. Anyone interested in learning more should visit http://comfortablyseated.com/index.php/investors/.

 

Photo credits: Top right: Better Tie Productions; Center left: Lori Lucas; Bottom right: Ruben Alvarez; Banner photo used with permission from ComfortablySeated.com

Jennifer Reynolds is a freelance writer based in Greenville, SC. In addition to writing for business publications, she writes humor under the pen name Nora Blithe. Read more at doorinface.com

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