Strips of food and cocktail camaraderie amid a gorgeous display of the Lincoln Center Square helped ease the banality of the rainy outdoors. Quaint. Fulfilling. However, the festivities couldn’t mitigate the vestige of existential woe. For if one thing is certain in this life, it is that the universe can be so, utterly cruel.
Steve Gleason, a recipient of the incurable Amyotrophic lateral sclerosis (ALS) neurological disease, faces the throes of depression, the deterioration of normal human function, and a mental engagement between his own wants, his fears, and what is best for his family on a
As the emotional picture ended and we made our way to the reception, we received some 1 on 1 time with director Tweel at The Lincoln as he shared his insights on the film making process:
How do you feel about the film screening at Howard Gilman Theater tonight?
I mean, I think that we had a good crowd. I think that, you know, I sorta poked my head in and was able to see that the movie was landing in certain places. I like to do that, and go and check, and see if people are affected in the ways that we intended. So it was cool. You know, this is a great venue; this is a great city for documentaries, honestly. And so, it’s always great to get a good documentary out to watch.
How long was the process of making the film?
In total, it took about five years to make the film completely. And Steve was diagnosed back in January of 2011 — he immediately started turning a camera on himself to document what was going on up until we premiered at Sundance this past year and it was almost on the five year anniversary of his diagnosis state.
Did you learn anything about ALS yourself?
I mean, honestly, I didn’t know a lot about ALS going in, yeah. I learned a lot. I learned that, you know, the sort of progression of the disease tends to go in sort of a stair step sort of way where you lose the ability to eat, and the ability to walk and you sort of adapt to the new lifestyle and then, shortly thereafter, you have to adapt to a completely new loss of motor function. So, that sort of up and down with the disease was very illuminating to me and the idea that, I don’t know, the fact that we don’t know a lot on the research side. It affects everybody differently; the pace at which they experience the disease is different for every patient. So, in a small way I hope that the movie brings awareness to the disease so that people want to understand it and, you know, perhaps even donate. That’s not the sole function of the movie, but it certainly something that we want to try to bring awareness for.
How did it feel working with Steve’s family?
They’re really amazing people. Steve, and Michel, and his caretaker at the time, Blair. They’re just incredibly giving people. All of them. And, incredibly forthright. So, as a filmmaker, you can’t really ask for anything more than that. As people being honest with you, and people telling you the truth when you ask them a question or when you’re around and you have a camera on and they’re willing to bear their soul. That’s incredibly rare, I feel like. And everyone involved in this movie is spectacular in that way.
