As reported in Chicago Reader; sometimes, the only way to deal with unsurmountable health horrors is to laugh. At least that’s how Ben Byer handled it, as he set into lightheartedly but truthfully documenting his life with amyotrophic lateral sclerosis, ALS, which progressively took away his ability to engage with life as he knew it. Before losing his life to his battle against the incurable, degenerative, neuromuscular disease, he made a point to share his story and others’ with the disease through his documentary Indestructible, which ultimately won multiple film festivals. After his 2002 diagnosis, he flew to six continents to capture many of the perspectives on the disease and experiment with many experimental options himself. He lost his battle to the disease in 2008 while his movie was moving onto DVD. He never stopped working in film.
Byer’s Background
Byer was only 31 when he received his diagnosis. Before that, he had packed in a life of story-telling in his time in journalism and film. He had dropped out of his journalism program at Indiana University to head to Paris where he stayed the year studying film. He spent his 20’s moving around in pursuit of a life in show business. His path was full of twists, taking just a pickup truck to the West coast to pursue movie production, before turning back to Chicago to work on screen this time, acting. Like many young artists, he made ends meet with his less passionate but more lucrative job- driving a meat truck, which became the inspiration for a semi-autobiographical play he wrote later. Through the 90’s, he successfully built up his career as a renaissance man of the stage, writing, acting, and producing plays.
In 2002, as his career was taking off, he had married, and had a son, John, he received his diagnosis. He had ALS.
Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis is a rare neurological disease also known as Lou Gehrig’s disease or locked-in syndrome because of the disease’s characteristic progression. Patients’ muscles weaken, causing muscle cramps and weakness, slurred speech, difficulty swallowing, weakness, difficulty walking and holding normal objects, and eventually losing the ability to breath. This is caused by the death of nerve cells in the brain stem, spinal cord, and brain. The disease is typically sporadic, but can also be inherited. It can occur in both sexes and any ethnicity, but is most common in white males between 60 and 69. ALS is typically fatal within years of diagnosis. For Ben, he was told he had two to five years.
His Diagnosis
As the symptoms began to make his daily life and career increasingly difficult, Ben didn’t give up on show business. As his strength and ability to speak clearly left him, and he couldn’t write as he used to, he adapted. He found a new source of inspiration, one that was recoloring life as he knew it: ALS. Sometimes losing your ability to follow your normal habits inspires a new creativity, and Ben found a new method of expression. He switched to writing using an eye-controlled computer, and he used video diaries instead of acting on a stage. He set to work on his next big and final project, a movie about ALS.
ALS, A Movie
Ben spent his next three years traveling the world to visit other ALS patients, doctors, scientists, and various types of healers to gather a holistic understanding and share their stories. He went to six countries, with $200,000 of funds gathered by donations. He shows the wider narrative interlaced with his own. The film captured his home life with his son and his charisma and humor, documenting his life as his disease progressed. His sister and coproducer of the film, Rebecca Rush, explained,
“Film was a natural progression. It was a way to have a creative outlet in a medium that was still accessible to him. I know he liked being on film. As his body deteriorated I think he realized how important it was to be visible. He wasn’t going to retreat and disappear as many ALS patients do.”
Since ALS is a disease without any FDA approved treatment, part of Byer’s journey was becoming party to many experimental drugs and healer remedies. He found improvements in speech and symptoms from a Chinese herbal mix, even more so from controversial fetal cell injections in China; but the improvements always faded, and his health continued deteriorating. Some drugs were more promising than others. With Iplez, a drug repurposed from treating childhood dwarfism, he found rapid relief, but the drug was taken off the market after being sued by a rival company for being too similar to their product, that for Ben, was not similar enough to have the same improvements. He tried the full range- an acne drug, fitness supplements, medical marijuana, Buddhism, and of course, denial. He said he thought there must be a fix out there, but as he put it on his blog, “I have come to understand that this was part of my denial. But denial is a powerful drug.”
The Films Release
The film went on to win awards across the film festival world. Despite the difficulty of the situation, Ben’s charisma marks the show. Their success in the festivals catapulted them into the next stage, they began to make DVD’s and preview the movie in independent screenings. Ben was filming and interviewing the doctors performing the surgery in his last days. In the midst of his movies success, Ben lost his life to the disease. His sister and producer described how he had just received a new pacemaker, but it didn’t work, and his lungs stopped working a few days later. Still, he never stopped working, he never gave into the disease. He never gave up who he was. Rush said, “He had already started on his next project. We never talked about what his ultimate goal was, but I know he had some plan for it.” She also describes how without his art to express his illness, it made him feel alone. Art is a way to express the feeling with emotion and self, and Ben had found his way to adapt to the different platforms he could express, and he never stopped, despite his ever limiting mobility. Right to the end, he captured his experiences and immortalized what ALS meant for him on film. With hope, he could help other ALS patients feel less alone with his thoughtful, honest, and lighthearted account of his final years. If you’re interested, check out Indestructible, the documentary.
