Portraits of Adventure / 3 Trackers / Nicki
Nicki
Brandywine Ski Resort, Ohio
January 2026
Nicki has spent most of her life negotiating with a body that didn't behave like others. 3 Trackers is one place she feels surrounded by others with similar, but separate stories. Born with Ehlers-Danlos Syndrome, a connective tissue disorder that touches nearly every system, she managed chronic pain for years before the diagnosis caught up to her in adulthood. In 2023, a cascade of seizures, accelerated by COVID, left her first paralyzed from the waist down, then months later from the neck down. Doctors told her she'd likely spend the rest of her life in a nursing home. Nicki, amongst other outdoor adventures, would go on to alpine ski.. She decided that wasn't the end of the story.
Rehab gave back what it could, but her fingers still don’t work well. Her core is functional, but weak. With mobility aids and leg braces, she walks short distances now, something no one in that hospital room expected. Nicki lives with her fiancé Trey, and describes their partnership through the illness as shared. That is, not her problem with his support attached, but a problem they're tackling together.
She met Kara, founder of Open Trail Collective, a couple of years ago and got pulled into their adaptive outdoor programming almost immediately. Most of what she'd loved before, dancing, art, indoor movement, was easy enough to adapt, the outdoors were not. Snow and ice close off most of what little is already accessible in winter, but ironically those provide for at least one activity, skiing. Something she tried for the first time this winter. Since she’s never experienced it before, this season was her first, no prior version of herself to measure it against. It simply is what it is, and she went in ready and open.
Most curious about her poles, Nicki’s hands don’t fully grip reliably. Not only did she not know how to steer, she didn’t know how her body would respond to the attempt. She grew up dancing, so she's used to falling, and when it inevitably happened, she had a smile on her face and laughed it off. Her goal with skiing is to get decent enough that it becomes something her and Trey can do together. After seeing her first session, it won’t take long.
Although Nicki has watched people aim pity towards Trey, she doesn't flinch from the word disability. She understands the discomfort others feel by the word, but proudly wears a shirt sporting “Disability is not a bad word”. The what-ifs of life still surface, but she has such a positive outlook that she brings herself back by remembering that just because things could be different doesn't mean they'd be better. The girl in the hospital bed who was told she'd probably never leave a nursing home, now gets to try new things, be outside, feel her muscles working…
She's come to feel that access is about people, not just designing the infrastructure. With the right people, she says, everything is accessible. One observation of hers on adaptive spaces built without disabled input: ramps too steep, equipment that looks adaptive but isn't safe to actually use, where using it actually puts the person at risk. She advocates to have people in the room who rely on the infrastructure also making the decisions.
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