INDEPENDENT LENS: Matter of Mind: My ALS
Premieres Monday, May 1, 2023 at 11 p.m. on KPBS TV / PBS App
From award-winning co-directors Anna Moot-Levin and Laura Green (“The Providers”) comes the profound documentary “Matter of Mind: My ALS,” which follows three people in the U.S. living with amyotrophic lateral sclerosis (ALS), a neuromuscular disease that leaves those impacted with—on average—two to five years to live. A profound and intimate story, the film examines the complex, yet everyday choices that people with ALS and their families face, as they live alongside this progressively debilitating disease and seek answers on how best to move forward with dignity.
Commonly known in the U.S. as Lou Gehrig’s disease, ALS is a neuromuscular illness that breaks down motor neuron cells. As it advances, ALS impacts the brain’s ability to control muscles, resulting in the inability to move, speak, eat, and—ultimately—breathe. Filmmakers Moot-Levin and Green explore the impact of ALS at different stages of the disease’s progression: from the early onset of symptoms with one patient to the last six months of the disease with another.
Through poignant interviews with the diagnosed individuals and their families, and documentation of the rhythms from interrupted and altered daily routines, “Matter of Mind: My ALS” takes viewers through the demanding realities of the illness through those whose life plans are forever changed.
In Durham, North Carolina, renowned African-American architect Phil Freelon receives his diagnosis of ALS on the eve of completing his life’s work: The Smithsonian National Museum of African American History and Culture in Washington, D.C. As he inches toward paralysis and loss of speech, he and his family grapple with the illness’ erosion of control, reflect on what it means to live and die with dignity, and lean on one another for support and strength.
In the rural California town of Arvin, former mechanic Charlie Wren lives on a life support ventilator, completely paralyzed except for his eyes. Cared for by his wife Angelina Flores Wren, who left her job as a medical assistant to become his 24/7 caregiver, Wren’s story highlights the herculean effort the two must make to live with this illness without a financial safety net.
In Nutley, New Jersey, Michele Stellato is diagnosed with ALS at the age of 32 and becomes the second person in the world to receive a new, experimental treatment at Columbia University. Motivated by this treatment opportunity, and with a background as a communications director, Stellato leans into her calling to raise awareness and advocate for the ALS community. She’s seen speaking on panels alongside others diagnosed with ALS, fighting for a future in which people can live with—rather than die from—the disease.
“It’s been over a century since the first diagnosis of ALS, and yet we still have more questions than answers in the current understanding of this disease,” Moot-Levin said. “The opportunity to broadcast our film on INDEPENDENT LENS means welcoming audiences to the experiences of those living with this disease, and hopefully, to feel empowered to fight for answers and a cure.”
“We learned so much about what it means to live a joyful and meaningful life, from the people who we had the tremendous privilege of making this film with, and we think our INDEPENDENT LENS audience will too,” adds Green.
“Matter of Mind: My ALS” provides snapshots of each person’s life, a culmination of unimaginable decisions the diagnosed and their families must grapple with. The film is the first of a series of three documentaries from Moot-Levin and Green, each focusing on a different neurodegenerative disease.
Directors: Anna Moot-Levin and Laura Green. Producers: David Alvarado, Anna Moot-Levin, Laura Green, Jason Sussberg. Executive Producers: Sally Jo Fifer, Tamara Gould, Lois Vossen. Presented by ITVS