Crippling Multiple Sclerosis Takes Filmmaker on ‘Wild Ride’ to Be Independent
(NEW YORK) -- Jason DaSilva was trapped in his apartment -- and in his own body -- when his wife Alison Cook was rushed to a New York City hospital in 2012 when her miscarriage bleeding would not stop.
Unable to walk and confined to a wheelchair with multiple sclerosis, DaSilva couldn't get a taxi cab that was handicapped accessible. So he sat alone in his Brooklyn apartment, unable to support the woman he loved.
"She had lost too much blood," DaSilva told ABCNews.com. "Everything just fell apart. It was horrible. We knew it was happening long in advance, but there was no way for me to get to the hospital. It was so surreal. She had to get in a cab and get there herself without me."
DaSilva, a Canadian filmmaker who has traveled to Africa, Iraq and India for his stories, was diagnosed with progressive primary multiple sclerosis at age 25, a disease that has advanced so virulently that today, at only 35, he has lost his ability to walk, use his hands to eat and, to some degree, even his vision.
DaSilva decided to chronicle his physical decline in a film, When I Walk, a documentary that takes the viewer from the moment his legs collapsed and he fell on the beach in 2006 to the present day as he champions the rights and needs of the disabled.
He says in the opening of the film that his diagnosis and struggle for independence has been a "wild ride."
"You really don't have the same sense of freedom you once had," he told ABCNews.com "I didn't realize that my life would only be limited to a few things I could actually do. It's very isolating and lonely as well."
The film, which was an official selection this year at the Sundance Film Festival, has its theatrical release on Oct. 25 in New York City and a Nov. 1 in Los Angeles.
DaSilva said that when he was able-bodied, "I never thought about people in wheelchairs going up and down stairs and taking cabs. Only after it happened to me, did my eyes get opened up. The weird thing is that everyone understands the problem, but the changes required take so long. I want to get the word out to the mainstream."
DaSilva has primary progressive multiple sclerosis, which differs from other forms of MS because the disease course has no distinct relapses, according to the National Multiple Sclerosis Society. It is characterized by a steady worsening of neurological functioning and is incurable.
As DaSilva spoke to ABCNews.com by phone from a film event in Vancouver, he said he continued to have transportation issues.
"It's the same situation," he said. "These things exist and they need to change. Even on this trip I was panicking on how to get to the airport in a car service that could take my wheelchair."
In the documentary, DaSilva is at first able to use just a cane to get around, but is soon reliant on a scooter to go about his filmmaking. He wants to continue living in vibrant New York City, but is hampered when his disability prevents him from gaining access to restaurants and other older buildings that have been granted exemptions from laws requiring wheelchair accessibility.
The subways are "treacherous," he said.
In the seven years it took to make the documentary, he created Axs Map, a mobile app for smartphones that maps handicapped accessibility in cities like New York and can be used not just by those with mobility challenges but the visually and hearing impaired.
The mapping project -- a crowd-sourced platform that is a kind of "Yelp for disabilities" -- continues throughout other cities for the 13.2 million in North America with mobility impairments.
DaSilva discovered that in cities like New York, nine out of 10 businesses on a block may be inaccessible to those with wheelchairs and scooters.
DaSilva's journey includes meeting his wife Alison, an environmental engineer, at a support group for MS families. Her father has the disease, but Cook struggles with the loss of her own freedom in making a commitment to a man whose health is rapidly declining.
"I think it's a love story, more than an activist's film," said DaSilva. "It's about the triumph over challenges -- that's the crux of the whole story. I have MS and am able to find love within it. I want people to draw parallels with their own challenges, however big or small, and draw their own conclusions with their own lives."
Throughout the film, DaSilva tries to find a medical cure for his MS, even attempting surgery for constrictions in his neck veins that one doctor attributes to MS. But the procedures cure only his headaches, not his disease.
But even that fails and in cinema verite style, the viewer watches his frustration negotiating the locations for his filmmaking and trying to make his hands work well enough to edit on his computer. By film's end, he cannot dress or feed himself.
Today, he relies on the help of voice-activated technologies to help him continue making films and now has numerous interns. "I have to adapt," he said.
"It's definitely gotten worse since the last scene of the film where I am transferring myself onto a chair and am able to lift my arms above my head and point at things," DaSilva said. "Now I need someone to help. My hands are kind of curling up into a ball. Now, it is going after my smaller fine-motor skills."
His voice weakens when he is tired, but on a joyful note, the couple now has an 8-month-old son who has enriched their lives.
Cook, who is 36, said the couple is "surviving" with additional help because of the baby and her husband's needs. DaSilva's symptoms have worsened significantly in the year since the film wrapped. "Every day is a struggle," she said.
She, too, said she has felt "stuck at home" because the city has not made more efforts to help the disabled. "It's frustrating and making me more of an advocate because I think it's so unnecessary -- these are such small accommodations."
"I think we in the United States are ones to show compassion to the most vulnerable," said Cook. "I don't buy the argument that it costs too much."
"The best moments are joyful and we are excited about what we are doing," said Cook. "The biggest thing he gets excited about is his work. Creativity can help you survive, though it's really tough when you are challenged."
Both were thrilled that DaSilva's next film, which also addresses the needs of the disabled, has received funding.
"But the feelings of frustration and isolation aren't going away," said DaSilva. "I don't think the fight is over -- that's really the big message. I feel like this is a battle in a way. I am not going to stop until people know what we are going through as people who are disabled and have mobility challenges.
"Just because the film is finished, doesn't mean I am going to stop," he said.
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