A Local Family Produces a Documentary Chronicling Life with Lou Gehrig’s Disease
The Gladis family, of Malvern, details the matriarch’s 35-year ALS battle in ‘Mariah.'
The search is on for Mariah’s sound monitor. Her every move must be audible to her loyal listeners—five home-health aides, a secretary, a loving husband, and a son who’s come home.
Mariah could choke. She could fall.
The Gladis family of Malvern—Mariah, her husband, Ron, and their boys, Coleman and Luke—have shared plenty. Now, they’re poised to share their decades-long journey with Lou Gehrig’s disease in the 90-minute documentary Mariah, which is in the final stages of postproduction, its release pending a final funding push via Edward Norton’s CrowdRise website.
Diagnosed with ALS in 1981, Mariah Fenton Gladis was given a 10-percent chance of surviving two years. A special mind trapped inside a body that cannot move, she remains a renowned psycho-therapist who sees clients four days a week. A true medical mystery, Mariah exercises five days a week with personal trainers. A 2008 Living Legacy Award from the Women’s International Center put her in the company of recipients Eleanor Roosevelt, Maya Angelou and Mother Teresa.
Amyotrophic lateral sclerosis is a degeneration of nerve cells in the brain and spinal cord, preventing patients from controlling muscle movement. The afflicted eventually become paralyzed. Most die of respiratory failure. About 5,600 people a year in the United States are diagnosed with ALS, and as many as 30,000 Americans may be living with the disease. Half survive at least two years after diagnosis; 20 percent live five years or more. Only 10 percent survive a decade.
Mariah is 67 years old. Her survival ranks among the longest in the nation. Physicist Stephen Hawking, 73, has lived with the disease for more than 50 years. In documenting his mother’s life, Coleman, a film director and producer, wants to ride the crest of the 2014 Oscar-winning Hawking film, The Theory of Everything. Coleman’s company, Blue Dragonfly Pictures, once called the film “The Wounded Healer,” then “Unconditional Hope: The Story of Mariah Gladis.” In the end, Mariah seems the most fitting.
“Art is at its best when it’s specific, and then someone in it becomes more universal,” Coleman says.
Ron began making the film in the early 1990s, when the family committed to the clinical trial of a growth hormone that promised to strengthen motor neurons that seem to die—or sleep—between synapses in ALS patients. He also followed three other patients.
A 2012 online campaign for Coleman’s version of the project raised $45,155 from 411 backers, funding startup costs. He’s trying to raise another $43,500 to finish. Mariah has attracted the likes of Chester County’s Michael Bacon, who wrote the score, and Oscar- and Emmy-nominated editor/storyteller Francisco Bello.
After visiting Bello in Queens, Coleman realized the need to include himself in Mariah. Bello says the film is about family and friendship—a journey and destination that wouldn’t be as powerful without Coleman’s voice balanced with Ron’s.
“Now, we have the passing of the baton,” Bello says in a promotional trailer. “That’s part of the story. It’s about [Coleman’s] life, maybe in 3-D, but Ron’s life, too. It’s like a jigsaw puzzle that he’s putting together.”
Mariah Fenton was raised in Rosemont, educated at Marymount and Temple universities, and trained in social work and social research at Bryn Mawr College. Well before her diagnosis, she founded the Pennsylvania Gestalt Center for Psychotherapy and Training in 1973.
In allowing people to see the world without the filter of the past or the anxiety of the future, Gestalt psychotherapy served as a perfect solution to Mariah’s predicament. Her own difficult history may also have helped. Her mother, a prominent Main Line real estate agent, was a loving soul—but she was also an alco-holic. Mariah’s father left when she was 2 years old. After he died, Mariah found her high-school graduation photo and a lock of her hair with his belongings. That picture became the cover of her 2008 self-published book, Tales of a Wounded Healer—Creating Exact Moments of Healing.
Mariah’s 73-year-old husband grew up in South Philadelphia. The day of her diagnosis, they went out for Ron’s birthday dinner, and he asked her to marry him. Following his 1965 graduation from Villanova University, he was an electrical engineer. By the ’70s, he had to “find the other side of his brain.”
Ron left General Electric in New York, along with its expense account and a company car, to travel Europe, then study and practice photography. He exhibited, and he starved. He eventually gravitated to film, before launching G2 Productions, which specialized in television commercials and corporate work. Over time, though, he shifted his focus to Mariah, her life’s work and business, and, since 2006, the Mariah Fenton Gladis Foundation.
“I have to be here,” Ron says. “I’ve had to face it, too. It’s a devastating illness. Sure, I want to get up and have someone make a cup of coffee for me; I want to walk on the beach and hold hands.”
Years ago, Ron says, Mariah said that having ALS made her a better person. “And I hated that she said that,” he admits. “Now, I say it’s made me a better person, too. I’m more understanding; I’m more patient. At its deepest, the thing is to love yourself, to love your body. If you reject your body, you reject yourself. You have to have a relationship with yourself. If she didn’t have a relationship with herself, she’d probably be dead.”
A major issue addressed in the film is caregiving. In America, more than 65 million people—29 percent of the population—care for a chronically ill, a disabled or an aged family member or friend, according to the AARP. For years, Ron and Mariah joked that either he’d strangle her or she’d strangle him. “[But] the good news is that she can’t strangle me anymore—she doesn’t have the hand strength,” he says. “We’re husband and wife. It’s a lot of work, but she tells me it’s worth it—and it is.”
Coleman knows the toll Mariah’s survival has taken on his father. “As a caregiver, you give up your own dreams,” Coleman says. “He was a great photographer. Then, in film, he had dreams as an artist. So many caretakers get burned out—there’s no completion. One thing I have to do is complete this film for my mom—and for my dad.”
In Gestalt therapy, there’s the notion of finishing unfinished business. If someone told you looked ugly in a dress, you get to say, “I like this dress, and I want to wear it,” to confront the trauma.
But a caregiver’s business is unfinished. “Even the most ninja of caregivers burns out,” says Coleman. “My hope is that this film will be a completion for Dad.”
Early on, Ron started videotaping Mariah’s life, from training sessions to struggles. He later shelved those 300 VHS tapes. Now, Coleman is trying to create a narrative to these vignettes—“emotional exorcisms,” the family calls them—to reconcile Ron’s “response to an epic, epic story that’s been going on for a such long time.”
“I wanted the world to see this, to see Mariah in a session, to see hope, to see light at the end of the tunnel,” Ron says. “I thought, if client after client was getting so moved, the world would get moved. Her work is incredible. You see people heal before your eyes, and in some ways, it’s helping heal her.”
Mariah isn't comfortable seeing herself on video. She consented to the project for Ron and Coleman—and for others who might benefit.
“I certainly hope that it’s a success—for Coleman, especially,” she says through Ron’s translation and amplification. “I want it to be honest and expressive of what’s important in my life—courage, love and loyalty. On the outside, my journey may appear to be more challenging, but everyone has their challenges, their Mount Everest to climb. Some do. Some don’t. I’m still climbing, but I’m past the base camp. I’ve had a team of Sherpas to get me to where I need to go. I think I gain strength [with time]. I’m waiting for my bionic suit to slip on.”
Mariah still offers Gestalt training at her home and through workshops often held at Temenos Retreat Center in West Chester, plus places like Virginia and New York. Twice a year, she teaches at the Esalen Institute in Big Sur, Calif. “It’s a really deep calling that I have,” she says. “I almost always pray before I work and ask for guidance. I want the best message to come through me so I’m able to give what another human being needs from me. That’s my driving force, and I’m amazed sometimes at my own strength. But I’m always afraid that I cannot be as sharp as I can be. Still, I’m very lucky. A lot of people with ALS have exhaustion.”
“She says she’s lucky, but she also goes to the gym five days a week,” says Coleman, who’s the translator after his father leaves the room. “You create your own luck.”
Josette Cicacci met Mariah in 2007 while working for Fitness Trainers Incorporated. She has since served as an aide in the Gladis home. “Though I was guiding Mariah through her workouts, I was gaining as much from her as I was giving,” says Cicacci. “I felt love from Mariah that I’d only felt previously from my own mother.”
While traveling with the family, Cicacci witnessed the considerable challenges that come with Mariah’s care. At the Esalen Institute, where conventional medical help is an hour away, Mariah was battling an upper respiratory infection. She reluctantly accepted a breathing treatment that might not have worked if Ron hadn’t sat close, caressing her forehead and coaching her to breathe as well as she could. “He didn’t flinch, nor panic,” says Cicacci. “His love was palpable. They were both living one breath to the next. Ron’s love and support for Mariah is arguably the most tangible depiction of ‘until death do us part’ I may ever witness.”
Paula Rosen, a retired senior clinical social worker at Swarthmore College, has shared a friendship with Mariah since they were graduate students at Bryn Mawr 45 years ago. “Never have I witnessed an ounce of self-pity from Mariah or Ron—just enthusiasm for life, dedication to family, and a deep desire to help others,” says Rosen. “Mariah and Ron inspire others.”
Describing ALS as a “spectrum disorder,” Dr. Leo McCluskey says it’s hard to determine what role biology has played in Mariah’s longevity. “No one can tell if Mariah is getting worse or better,” says the neurologist, who has treated her at the Hospital of the University of Pennsylvania. “The people who try to live their lives as if they don’t have ALS—while it’s hard to do—do their best. That kind of person maximizes their quality of life for whatever time they have the disease.”
Many ALS patients give up, slip into depression, then ask to die. Ron says Mariah has always had “happy hormones,” rather than angry or resentful ones. “It’s what I also stay away from,” he says of the latter. “If I let them flood my body, they’d kill me.”
After her diagnosis, Mariah was advised not to exercise. To her, though, it seemed natural to continue, in order to stave off atrophy. “I’m a thinker,” she says. “I consider what I’m told, then I come up with what I believe is right.”
She was also advised not to risk childbirth. Instead, she delivered two boys, who share her red hair. “I owe my life to her defiance,” says Coleman.
He equates what his mother calls “sacred denial” to Steve Jobs’ “reality distortion field,” a two-week period in which the late Apple icon would ignore naysayers to his most recent proposals or innovations. Two years, then death? Mariah was convinced it wasn’t true. A “feeler and healer,” her family says, she learned how to talk to ALS, an alien that entered her body to kill. To survive, she confronted it as a friend. “I have a relationship with ALS, a reluctant visitor with no intent to harm,” she says.
Mariah barely acknowledges that there’s something miraculous about her long-term survival, insisting that she’s no more deserving than anyone else. “I don’t want to say that I was given a miracle and someone else wasn’t,” she says. “I definitely say that I’m here for a purpose, usually to be in complete alignment with the person I’m helping.”
Her physical condition has heightened an intuitive empathy and a call to heal others. “I know a lot about the way to travel a different path,” she says. “When people see me, it’s obvious. I’m vulnerable, and that impact could be disarming—or people could be afraid. But usually it’s a shared vulnerability [with clients] of the truth: As humans, we’re all vulnerable.”
When Melody Schaper met Mariah, she’d given up her career to raise a family. She lost herself in the process. A sister with Down syndrome had died, and Schaper’s psyche begged for help. She became addicted to alcohol and pain medications. Mariah gave her the courage to change her life. “For me, Mariah is a pure symbol of strength and hope,” says Schaper. “She gives without depleting herself. She shows truth. If her hair gets in her face, she needs someone to move it away. She needs someone to help her to the bathroom. And she’s the essence of pure beauty, and everyone needs to see and understand that.”
Does Mariah have fears? “I don’t go there with ALS,” she says. “I’m able to stay in the here and now. I have other fears—a fear of falling and what that could mean. I have a fear of traffic and of others on the road.”
In 1986, she survived a horrific car accident that resulted in six surgeries. “I need blinders, like the horses,” she says.
Ron and Mariah didn't tell their boys about her ALS until an article appeared in the Philadelphia Inquirer in 1991. Luke was 10, Coleman 8. “Others were going to say, ‘I understand your mom is dying,’ so we wanted to be the first to tell them,” Mariah says. “I remember reassuring them that I wasn’t a typical case, that I was still very healthy and doing everything humanly possible to stay healthy. Then, my only real symptoms were my hands and shoulders—I couldn’t pick them up.”
Coleman recalls the day he was told. He’d already begun to suspect that something wasn’t right. “I blocked out a lot of that pain,” he says. “Mostly, I just remember my mom gagging over the sink. It’s when I first learned to enter another parallel universe. I mean, you hear your mom choking all the time. It’s just something no one that young should have to hear.”
The publication of Mitch Albom’s Tuesdays with Morrie in the 1990s, a chronicle of Morrie Schwartz’s ALS, brought more attention and questions. “I’m grateful it was written, and he had such a bright spirit, but they both had the surety that he would die,” Mariah says. “I always believed that I would know it—if I was dying—and I still believe that.”
When Ron’s 94-year-old live-in Aunt Eleanor died in April 2014, Mariah lost a best friend. Her viewing and funeral are in the film. It also shows a fall Mariah took, her difficulty brushing her teeth, and the stories of some of her patients.
Coleman’s detachment from the film has been difficult, but he’s no amateur. A product of the top-notch film school at Ithaca College, he’s produced, directed and composed scores for feature films, music videos and television commercials since leaving for Los Angeles in 2008. There, he has worked in production for feature films and TV shows like Freeloaders, The Bachelor and AMC’s Mad Men.
When it comes to Mariah, his anxiety runs high, and he admits to bouts of anger and sensitivity. “The film is overwhelming for me. It’s the most difficult thing I’ve ever done,” says Coleman of the project. “Much of this footage is heartbreaking. I’ve been walking the line. It’s my family’s story, and I feel OK that it’s my family. But the best story I can tell is aided by the fact that it’s my story, too.”
“I hope it’s interesting to other people,” adds his mother, who’d like her son to marry “after the movie.” “Right now, his life’s on hold.”
As his mother heads out for a gym session, Coleman walks to the basement, to a closet in Mariah’s office that’s been converted to an editing room. His storyboard spans two corkboards filled with handwritten, color-coded index cards.
“I’m extraordinarily blessed to be loved by my family,” Mariah concludes as she’s ushered off.
“And we’re blessed to be loved by Mom,” says Coleman.
If you would like to support the documentary, Mariah, please visit this website.