New skier with ALS tackles Snowmass, proving the disease can’t hold her back
Asia Jami was diagnosed with Lou Gehrig's disease six years ago. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that impacts nerve cells in the brain and the spinal cord.
Asia uses a wheelchair, but last week, she skied down a few runs at the Snowmass ski area with the help of Challenge Aspen, which provides outdoor experiences to people with disabilities.
ALS is terminal. The ALS Association says a person's life expectancy after diagnosis is typically about two to five years. But some patients live beyond that range, including Asia.
“I think (it is) a positive attitude,” said Deb Sullivan, director of Challenge Aspen’s Recreational, Educational and Cultural Program. “A go-get-‘em attitude is part of it. … It takes a lot in a person to search out support. And if that person has that, I think there’s that will to experience and to live.”
Asia's experience was part of a collaboration between Challenge Aspen and Team Gleason, whose mission is to empower people with ALS to live purposeful lives. Asia's outing marked her first time skiing — and she has more on her to-do list.
“She had a bucket list,” Sullivan said of Asia’s trip to the Snowmass. “And if things open up, they might get to dog-sled or maybe go to Pine Creek Cookhouse. They’re definitely going to the hot springs. They want to go to the adventure park. And they want to do the Alpine Coaster. She wants to snowmobile. I mean, she just wants to do things that she’s seen pictures of in the snow.”
Asia’s friends Kamilah Pleasants and Valerie Wardwick, who traveled from North Carolina to support her, have been watching closely.
Pleasants described Asia as “giving” and “demanding.” Wardwick called her “ambitious” and “very determined.” Wardwick added that Asia “always finds an answer to a problem.”
Cami Crady, Asia’s instructor for the day, agreed: “Honestly, it gives me shivers when I see her. She seems like a really happy person.”
Asia is mostly nonverbal. Her friends and her caretaker help interpret, but Asia can respond to most questions herself. Asia told her instructors that she was nervous before she began skiing.
Challenge Aspen has a lot of equipment and precautions to keep participants safe, but skiing always has its risks.
“The one thing is: We are heavy,” Crady said. “There’s heavy equipment, there’s me, … there’s Asia in the sit-ski. So if anything goes wrong, it goes pretty wrong pretty fast and pretty drastically.”
Despite her nerves, Crady and Asia were skiing faster than all the other beginners on the Meadows ski run — and Asia’s nerves disappeared.
Wardwick said Asia’s personal mission on this trip was to disprove stereotypes about people with ALS.
“One of the things she also told me was … she wanted to do something different,” Wardwick said. “And show people that people with ALS want to still do stuff and it’s not just over because you have ALS.”
Wardwick said Asia always finds a way to get what she wants.
“If you tell her ‘No,’” Wardwick said, “she’s going to come back and have a valid reason for why it should be ‘Yes’ and get you to doubt what you said.”
Asia’s mission resonated strongly with Crady, who has her own reasons for working with Challenge Aspen.
“I grew up with a brother who has visual impairments,” Crady said. “And when he was diagnosed, … it was challenging for him to keep on skiing, because I’m from France and we don’t have the same programs. It’s not as accessible. I think it’s wonderful to be able to give the opportunity to anybody with any type of ability to enjoy the outdoors. I think it has a healing power to just be outside”
After a few runs, Asia had a message for the Aspen community.
“Don’t be scared,” she said.