Here’s something to be thankful for: You don’t have ALS.
Every day that you can wake up and say that, consider yourself fortunate. There are many — too many — who can’t. About 30,000 in the U.S. alone. One of them is local songstress and ALS awareness advocate Cathy Speck, and although ALS saps more of her energy every day, she tirelessly continues doing everything she can to make more people aware of this horrific disease, from jumping out of airplanes to dropping frozen burritos on her head.
One of the less wacky things she did was to help independent filmmaker Nadine El Khoury raise funds to get El Khoury’s ALS documentary completed. Called “Better Days: An ALS Documentary,” the project began when El Khoury’s own friend developed ALS — amyotrophic lateral sclerosis or “Lou Gehrig’s disease.” She was so shocked by the devastation ALS causes, she decided that more people need to know about it and, moreover, pitch in to find a cure.
She followed four ALS patients, including her friend, for five years and created the documentary, during which time she discovered Speck’s song about her own mother’s death from ALS, called “Sweet Beyond.” It was serendipity for the two of them to connect, and Speck’s song became part of the documentary. However, the music wasn’t the finishing touch for the documentary. After sinking $66,000 and seven years into the documentary, El Khoury was still $23,000 short of funding the whole thing.
Last January, a fundraiser was held in Davis, and the funding gap got a little smaller, and a GoFundMe campaign started, and the gap got even smaller, and here we are, less than 12 months later, and El Koury has finished the documentary. As a way of saying “thank you” to all those in the Davis area who donated to the cause, El Khoury and Speck are offering a free viewing of the documentary from 1:15 to 3:30 p.m. Sunday, Dec. 6, at the Davis Community Church Fellowship Hall, at 421 D St. in Davis.
If you don’t know what ALS is — go see it.
If you already know all too well what ALS is — go see it.
It will shock you, yes. But it will give you hope, too.
“It’s a beautiful human story,” says El Khoury. “It’s a story about any of us. Any of us can wake up and have our world completely changed. And even though this disease is devastating, the story is filled with precious sweet moments.
“The first challenge after I finished filming was to create a story about ALS that people would want to see, and not shy away from because it’s such a sad and difficult subject to sit through. So I focused on the people more than their disease. The second challenge was to stick with it to the end even though I came close many times to giving up.”
She explains that it wasn’t merely the time involved to filming and edit the documentary, but also the emotional toll.
“I was getting to know and care about people with a devastating disease, so going home after filming and thinking about someone helplessly stuck without being able to move — it’s very sad. Then, during the editing, looking at all that footage over and over again.”
Another challenge was translating complicated physiology into language everyone could understand.
“Understanding and conveying the science of ALS as explained by the researchers I interviewed was a huge challenge, even though they did their best to simplify it. It is mind-boggling, the science of our brain and spinal cord.”
All that said, and falling short financially, too, El Khoury didn’t give up.
“In my heart, I knew I had to finish, for all the people who believed in it and wanted to see it done — especially the people in it, their families and friends.”
Now that she has finished the film, she says, “A big chapter of my life can now be closed. I also feel a big sense of freedom and relief because it was a very taxing project.”
But there’s still one more challenge: getting “Better Days” in front of people’s faces.
“I feel like I’m sharing a beautiful child with world,” says El Khoury. “My dream come true for this project is to be able to screen it in every state in the U.S. where there are ALS communities and meet all of them.”
Besides raising awareness about ALS and, hopefully, funds for more research, the documentary offers emotional support, understanding and validation to those with ALS and their friends and family too. El Khoury says people actually come away from the documentary feeling better and more hopeful.
“The highlight is seeing people with ALS happy to know that people care and want to help in any way they can. This documentary changed me completely as a person — for the better. I have become more aware and more sensitive to people in general. And I’m hoping it will do the same for others.”
Now that she has “Better Days” wrapped up, what’s next? Something a little less emotionally taxing: rodents.
“My next project is a story I’m writing about a family of mice and a family of wombats with certain gifts living next to each other in one big home and interacting with a few humans they have a very special relationship with.”
Wait for the wombats, but don’t wait to see “Better Days.” Particularly if you were one of the people who came to the fundraiser last January or donated to the GoFundMe acccount, because you — yes, you — helped make this documentary happen. Wouldn’t it be something if, working together, chipping in where we can, we can help find a cure for ALS? Imagine a day when ALS, like polio, is a disease that people “used to get.” Those will be better days, indeed.
— Email Debra DeAngelo at firstname.lastname@example.org; read more of her work at www.wintersexpress.com and www.ipinionsyndicate.com