How might your life change if you only had 20 more years of sight?
The run came and went in a blur. Emilia Wint struggled to navigate the contrast between the packed dirt of the forest floor and the streams of light shooting between the canopy in the afternoon sun.
“Uhh, that was really hard to see, felt sketchy,” she pressed her friends at the bottom of the track, straddling her mountain bike. Hmm. Everything appeared fine to them, they assured.
That’s odd. It dawned upon her, “Maybe I’m seeing this differently.”
As a member of the US Freeskiing Team, the ability to differentiate between the snow, the sky and the terrain of the slope in flat light is vital for competition. On dark days the sky and snow are basically the same color and she was having a hard time seeing out there too.
Something wasn’t right. After day’s worth of tests at the hospital she found out why.
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Our call crackled in and out, Emilia’s voice was a soft murmur under a barrage of conversation at nearby tables and passing cars. I overheard a pair talk about their astrology signs and the homework they didn’t feel like doing.
She plugged in her headset and the world of stereo sound faded out. Her voice honed in with 20/20 clarity. The wind, like lifting a sail, would rush in and fill my headset from time to time.
Emilia speaks in a calm, easy-going manner, and she laughs easily. She emphasizes key points and jokes by talking faster and raising the pitch in her voice; you’ve got to keep up.
She had just gotten back from 3.5 months Patagonia. We talked about the turning point in her life.
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The Turning Point
“You have this thing, it’s Retinitis pigmentosa. There’s no cure, but you’re young. Talk with the genetic counselor and see me again in a year. Don’t look anything up on the internet,” Emilia relays her doctor’s prognosis.
She didn’t know what the diagnosis meant and her mind was focused on other things anyways. A few days later, she left on a six week trip to compete at the World Cup in New Zealand. She would be skiing on a twice reconstructed knee that wasn’t holding up as well as she had hoped after four years of rehabilitation.
The practices came and went. In the meantime, Emilia was receiving more information about the disease from her mother back home.
One paragraph shook her to her core: “’Presents in people with adolescent night blindness.’ Which I kinda had. ‘Depressed scores in ERG tests,’ (which is basically like an EKG tests for your heart, but for your eyes). And I had low scores in that. And then ‘most people with Retinitis pigmentosa go blind by the time they turn 40.’”
Um, what?
“I called my mom, and was like, ‘what the fuck? This is not WebMD. This is actually in my chart,’” she recalls of the frantic exchange.
Emilia would go on to place 8th at the competition and out of the finals. It was a run that a few years prior she probably would have medaled. The next day she couldn’t walk down the stairs.
“What would I have done if I had made finals?,” she asked herself. She needed to take a hard look at her next steps.
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Emilia had always wanted to compete at the olympics, but she needed to decide if she was okay with the possibility of getting hurt. Again. It’s part of the game.
She did some mental math.
She was 20 at that point. Two years in a physical therapy room would be 10% of the time she had left to see. Was that worth it?
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Emilia doesn’t have time to live the life she wants later. Not if she wants to see it all anyway.
After retiring, Emilia had to figure out who she was outside of skiing. She grew up as a professional and it was her entire identity. Now she was a wasn’t.
She went on a tear of adventures she had always wanted to try, but never had the availability for because of skiing: Wildfire fighting, completing a college degree in 2.5 years, a remote medicine fellowship in Ecuador, an attempt at climbing The Nose at Yosemite. Emilia would not slow down in her pursuit of living.
It’s a simple decision making process for her: “What are you going to remember in 20 years? I want to remember riding this epic trail in Moab, not doing laundry,” she says.
It took Emilia a year to move beyond the constant feeling of imminent mental breakdown, despite all that she was up to. Now that she’s in a positive headspace, she feels a sense of gratitude.
“The diagnosis has given me a push to live my life right now. Because whatever it is, I might not have this opportunity forever. And that frame of mind is a special thing,” she says on her blog.
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On Committing to Living a Full Life
Emilia shared her perspective on how she’s choosing to live a full life post-diagnosis.
She recognizes that it can be scary and that she’s also coming from a place of privilege (with some financial security, little debt, and a van that offers cheap accommodation, etc.). She’s also burned herself out from time to time.
Still, her input offers guidance for pushing our own boundaries, and maybe doing more than you thought was possible.
Living Intentionally
“It’s so easy to not do it,” Emilia declares in our call.
She continues, “I met so many people in Patagonia who said, ‘I’ve wanted to come here for years. I just retired and finally got the chance.’ I don’t have 30 years to do this thing, I want to do it now.“
“Acting intentionally is really important. Picking up the phone when you know you should call your friend. Telling someone you love them. Things can change so drastically, it would be so sad to not pick up the phone, not to tell them you love them. Not to do that thing you really want to do.”
“Being intentional is making it happen, with the way you spend your time and your money.” she says.
Face the Fear
Emilia has traveled to Southeast Asia, South America and all over the U.S.
“You can do it, it’s not like I’m an elite travel person, it’s not an exclusive thing. You just have to book the ticket. I went to SE Asia and used my credit card miles there and back. The whole month cost me about a $1,000,” she shares.
“It can be horrifying,” she admits, “but you can push past that. Exist in the discomfort.”
“For weeks in Bangkok, I had this burden: I don’t speak any Thai. I was horrified about this one micro instance. I’m going to land there, then what am I going to do? I couldn’t think about the rest of the adventure because of this.”
“Then I got there and went to a taxi stand, showed them my phone, then got to the hostel. Yea, you will probably be ripped off a few times, but then you’ll learn,” she recalls of confronting her fear head on.
Take a Step
“It can feel horrible failing, but you can’t avoid failing. I’ve had to work towards being comfortable with it,” Emilia offers.
“Take baby steps. Everyone has ideas of something they want to do; put it in your calendar or tell someone about it. Put one thing into motion, and build off of that. Do one thing. Just start. Hold yourself accountable. Make a concrete step.”
For a long time Emilia didn’t feel these were things she could do, but her mindset has shifted as she’s begun pursuing her different interests. “You do belong here, you are the type of person that can or should do that thing,” she says, both to herself and others.
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I came across Emilia’s story when researching the American Alpine Club’s Live Your Dream grant. She had applied with the goal of climbing The Nose of El Cap in Yosemite.
From her account they failed their objective: “we scared the shit out of ourselves for two months… we realized we were way over our head.”
She went on to talk about how she mentally re-framed the situation: “We could have walked out of there feeling like failures… but we recognized that, ‘oh wow, we would never have been able to do these 10 climbs otherwise.’ Now we can go back next year and build on that.” I admire her tenacity and light-heartedness in spite of.
You can read Emilia’s stories on her website, emiliawint.com
Aaron Gerry 