Life Matters Media
Quality of life at the end of life

New Documentary Offers Blunt And Considerate Look At ALS

Teenagers Ask Principal Tough Questions

BY DANIEL GAITAN | daniel@lifemattersmedia.org

Inspiration can be found in some of the most unlikely places.

When noted filmmaker Dan Habib learned about high school principal Gene Connolly’s struggle with amyotrophic lateral sclerosis, also known as ALS, he knew it was time to get his camera ready.

“It wasn’t by design,” Habib said. “This film came about by happenstance.”

The two met in 2014, when Habib learned about the special connection his teenage son Samuel had with the principal. Samuel was a freshman who was living with cerebral palsy.

Filmmaker Dan Habib

“I literally saw Sam and Mr. Connolly having a conversation and neither one of them could speak,” Habib told Life Matters Media. “I had to tell this story. This couldn’t be happening anywhere else in the country. I dove into it a lot more than I thought I would.”

When Connolly lost his voice and had to use a communication device, he gained a renewed appreciation for Samuel’s strength and spirit.

Connolly is the subject of Mr. Connolly Has ALS, the bold new documentary short being rolled out across the nation. Connolly served as principal of Concord High School in New Hampshire for 14 years. He left the role in 2016, when he felt he could no longer carry out his duties.

Habib’s mission is two fold: to educate audiences of all ages and health stages about ALS, and to encourage every viewer to make each moment matter.

“I never thought that it was a story that’s inherently sad,” Habib said. “I saw it as a story that reflected Gene’s spirit and his family’s spirit. It’s not all about sadness. Everyone, including my own family, deals with challenging things. It’s not all sadness everyday. You have to laugh at some of the absurdity that we all go through.”

ALS is a terminal illness affecting 30,000 people in the United States. It’s particularly cruel because it attacks nerve cells in the brain and spinal cord.

Early symptoms include tripping, slurred speech, muscle cramps and sometimes, uncontrollable periods of laughing or crying, according to the ALS Association. As breathing muscles become impacted, patients often need permanent ventilatory support to assist with respiration. Although the body weakens, the mind remains sharp.

Habib’s new 30-minute documentary takes doesn’t patronize Connolly or his teenage students. Most of the film consists of Connolly fielding blunt questions from students.

One student asked him if he ever considered ending his life with doctor-prescribed drugs.

“I have thought about it, but I am one of the world’s optimists,” Connolly replied.

The local newspaper didn’t ask Connolly this question when it published a profile. Habib said that’s only a student would ask a question so frank.

“As long as it was about engaging students, satisfying their curiosity and telling him what they were thinking about, Connolly was willing to do it,” Habib said. “That question stood out. I asked Gene if he wanted to answer this question and he nodded.”

Another asked him if people treat him differently.

“I have noticed that when people approach me, they talk to me differently,” Connolly replied. “While I look different, I am the same person.”

Habib said this query resonated deeply.

“It shows how we as a society treat intelligence,” he said. “This shows that even someone who has all their mental faculties intact, if they lose the ability to communicate verbally or to walk and talk in a traditional way, people see them as less intelligent. It shows how tenuous our perception of intelligence is. It’s cultural.”

Most importantly, Connolly appreciates the documentary, which Habib called “the most emotional film he’s ever created.”

Connolly attended the premiere, sharing his story again with all who came to listen and learn.