The post William Barkan: A Journey Through Vision Loss and 100-Mile Racing appeared first on iRunFar.

On the morning of Sunday, June 30, 2024, the crowds surrounding the finishing track of the Western States 100 erupted into a roar as William Barkan ran the final 100 yards to the finish to become the first legally blind person to finish the iconic course. And while he missed the official cutoff by a mere 30 seconds, it was a finish and accomplishment no one at the track that day will soon forget. In this article, we get to know the person behind that iconic effort.

Childhood Vision Loss and Running

Barkan and his fiancé Kim Perricelli live in Mill Valley, just north of San Francisco, California, with the route of the Miwok 100k and the headlands of Mount Tamalpais as their backyard. Now 40 years old, Barkan grew up in San Francisco in the Sunset District and participated in all kinds of sports — from martial arts to basketball, baseball, and soccer.

When he was around age 10, his teachers started to notice vision issues while he was reading — there were some problems with speed, acuity, and misrecognizing words.

After visiting an ophthalmologist and the University of California – San Francisco Retina and Vitreous Clinic, he was diagnosed with Stargardt Disease — a rare genetic eye disease in which fatty material builds on the macula — and he switched from team and contact sports to running track.

Stargardt Disease, Running, and Ranching

The disease onset wasn’t sudden: Barkan had between 20/50 and 20/100 vision throughout middle school. He could still read a book and a topographic map without a magnifier. Rather, the change was slow and progressive.

“With my vision, and at that age, it was pretty negligible. But at the same time, knowing there’s going to be a change, my parents had the foresight to help me switch to running. So, my sister (who’s two years younger) and I got enrolled in the private Billy Hutton Track Club, and the coaches were really tough,” said Barkan, who remembers sprinting bleachers with the club between fifth and eighth grade.

In an extremely rare scenario, Barkan, his sister, and his older brother all developed Stargardt Disease. While Stargardt is hereditary, it’s a recessive gene.

“For all three of us get it is sort of like winning Powerball. The odds are pretty phenomenal. At the same time, my brother still plays basketball and has three little kids. My sister is a paraclimber and won nationals for her division, so she’s strong in that field. We are all engaged and grew up together figuring these sports out with vision loss,” said Barkan.

He ran cross country and track while attending the Thacher School in Ojai, California, a private boarding school adjacent to the Los Padres National Forest known for its horse program.

The students care for horses and livestock, and the school places an emphasis on outdoor learning through activities like backpacking. “You wake up early to handle the horses, shovel a lot of horse manure and dirt. Every time you get in trouble, minor infractions are related to manual labor, like cutting trail, fixing fences, and getting all the horses from the upper pasture,” said Barkan.

As a teen and during those formative years, the Stargardt Disease became more noticeable and couldn’t be ignored when considering a future career path. “The condition can be isolating, depressing, and emotionally more difficult,” recalled Barkan.

After graduation, he briefly studied environmental science at the University of Colorado Boulder before transferring to George Washington University in Washington, D.C., where he studied political science and international affairs.

Intelligence Field and Thru-Hiking

Upon finishing university, Barkan first went into education, working for the National Outdoor Leadership School in Wyoming. “It’s a great organization,” said Barkan. “I had taken their classes in college, but my academic interests were not fully supported in Wyoming, so I went back to D.C. to work for the federal government,” he added.

Barkan worked for nearly a decade in the intelligence community with various agencies. He mostly supported the military as an advisor and research analyst, focusing on Afghanistan and Pakistan. Throughout his twenties and early thirties, he was deployed to the former three times, totaling more than a year in the country.

“After being a daily briefer in the Pentagon, I got pretty burnt out. I was cleaning out my apartment in D.C. after coming back from my third deployment. I found this documentary my parents gave me that I’d never watched about thru-hiking the Pacific Crest Trail (PCT), and this whole culture of trail angels and trail magic. That flipped a switch. I was like, ‘Man, that looks so much better than what I am doing,’” said Barkan.

It took two years, but he left the government at the close of 2015 and thru-hiked the PCT the next year. After that, he moved back to the San Francisco Bay Area, where he got a new role working in trust and safety at Google, where he stayed for seven and a half years.

Running remained a constant in Barkan’s life. While running in high school, Barkan first learned about the Barkley Marathons through a coach who had completed four loops before dropping. In college and while living in D.C., he was involved in road marathons. After hiking the PCT, he craved more trail exploration.

He registered for the 2005 Tamalpa Headlands 50k, which was a rough DNF that Barkan puts down to not being sufficiently trained for the accumulative vertical. He returned in 2017 to finish the race, which was his first successful ultramarathon. Prior to completing the race, he wasn’t sure if it would be possible with his vision impairment.

“Stargardt Disease affects central vision, so what’s right in front of you — a car, person, a boulder. My peripheral vision is intact, enabling effective ambulatory vision. I can walk around pretty well, but my main challenge is fine details, and my vision has gotten worse,” said Barkan.

Daytime running is easier for Barkan as he can see very, very little during the night. Through a local run club, he became friends with David Li, who helped him train for a 50k and would go on to be his crew chief at the 2024 Western States 100.

Ultras: Guides for Blind and Visually Impaired Runners

In 2017, Li pointed Barkan to a podcast interview with Kyle Robidoux, an ultrarunner who has Retinitis Pigmentosa (RP), which, according to Barkan, “creates a very limited field of vision, like looking through a little pole.” Through Robidoux, Barkan learned about running with guides and decided to try it for himself.

He said, “After training up with guides, I started using them in road racing, too, because it was way easier to get around crowds of people [with guides], and navigating crowds got a lot harder for me as my vision got worse.”

During that time, he also met another leader in the blind running community, Richard Hunter, who became another mentor. Hunter founded United in Stride, an organization that pairs sighted guides with blind runners in partnership with the Massachusetts Association for the Blind and Visually Impaired (MABVI).

With a dialed team and the aid of guides, Barkan worked his way up to the 100-kilometer distance, running the Ordnance 100k, and registered for the 2019 Tahoe Rim Trail 100 Mile. That year, Barkan joined Robidoux and one of his guides during a Western States 100 training camp.

While training for the Tahoe Rim Trail 100 Mile, Barkan was running a local 50k and took a wrong turn, and a woman named Kim called him back to the route. As it turned out, they had the same coach, and they started talking and seeing each other at races — falling in love along the way.

Today, they’re engaged and getting married later in 2024.

Race Organizations, Adaptive Runners, and Inclusivity

Barkan was stunned to even draw a spot in the Western States 100 with only eight tickets in the lottery. He’d assumed he would race it in another five years — not right after entering. He noted how welcoming the Western States 100 board was when it came to figuring out the logistics and giving him the support he needed to participate.

He’d run plenty of other challenging mountainous and backcountry ultras throughout the West, but how a race organization supports visually impaired runners can be pivotal for Barkan.

“The biggest thing for the race organizations if you have an adaptive athlete — blind, amputee, hearing impaired, whatever — is to be open and have a conversation: ‘Tell us what you need, and we’ll figure it out.’”

He went on, “I’ve had race directors who are really resistant to the idea of having a guide with me the entire race or say, ‘Can’t you just have one pacer?’ But it’s not pacing. To call out every single obstacle for 50 miles and 15 hours would be impossible. The maximum a guide can go on trail is eight hours.”

He added, “I’ve had issues with race organizations that have formal policies and requirements for disabled athletes that we have to follow to participate in their event, rather than being flexible and adapting a plan for each athlete.”

For instance, one race required him to run physically tethered to his guide at night. “If you clip yourself to somebody running on singletrack and you’re behind them, what if they stop? You’re tangled and flying off the trail — it doesn’t work at all,” said Barkan.

In a 2017 report, the “Community Eye Health Journal” said there were an estimated 253 million people with visual impairment worldwide, and 0.49% have no usable sight.

To be legally blind, a person has an uncorrectable visual acuity of 20/200 or worse. Barkan said there’s “a whole range of vision loss, like no field of vision, or zero light and dark perception, or no color perception.” He adds that “Running with other blind runners has educated me a lot, because what might work for me is not necessarily going to work for every blind runner.”

In general, most runners are respectful and practice sound etiquette, but sometimes random questions have floored Barkan. He shared, “Ten miles into a race, a runner asked me, ‘How are you going to finish this race?’ I’m like, ‘Well, we’re going to do our best and hopefully get to the finish line.’” Others have commented on how running with poles or a guide is cheating.

2024 Western States 100 Experience

Barkan’s first Western States 100 didn’t go quite to plan. While the altitude wasn’t a factor and his guides, all of whom he’d run previous ultras with, were “phenomenal,” his quadriceps started cramping badly about 25 miles in. He had to sit down on the Duncan Canyon segment from Duncan Creek to Robinson Flat.

“There was not enough salt in my body, and I’m still figuring that out with my coach,” said Barkan. “That really cost me a lot of time, not having that dialed in or having more backup plans. I got some salt caps, and that really helped. But then we were working to fight cutoffs for the next 75 miles,” he shared.

The pressure of chasing cutoff times led to very limited or no transition time at aid stations, and other self-care steps — like tidying up his feet, changing footwear, and consuming enough calories — were skipped.

He only spent two minutes at the Robinson Flat aid station at mile 30. That brevity ultimately led to foot issues, including blood blisters under his big toenails caused by heat and wet feet. Tylenol aided him to keep going.

By the closing 15 miles, he struggled with extreme IT band pain.

At the mile 90 aid station, Scott Jurek surprised him — filling his water bottles, offering bacon and encouraging words. He thought for a second he might be hallucinating. His fiancée, Kim, who ran with him for this portion of the race, pushed him out of the station, telling him he had to move and had no time.

At the mile 94 aid station, he said, “My crew was there and literally threw water bottles at me and just said, ‘Don’t even stop’ — I only had one or two minutes [to spare for the cutoff].”

The next section featured the most challenging condition for Barkan to run in, visually. He said, “If I’m running on a trail and there’s a ton of light, like late morning or late afternoon, coming through the trees, it just does scattered light all over the ground and on singletrack, I can’t see anything.”

He shared that Kim continued to be a great source of encouragement, saying, “We both fell, got our crap back together, and knowing the time cutoffs, she pushed me and pushed me.” At mile 99, he had about five minutes. Kim told him to run on without her and meet his crew to guide him the rest of the way.

“At Robie Point, people are losing their minds and my crew said, ‘Literally drop everything.’ Running the roads, I must have had 12 people with me. I didn’t have my Kim to guide me, so I told Thomas, who was in flip-flops, to guide me. But I couldn’t hear, because it was so loud at the track,” he said.

“I slammed right into the chain-link fence and bounced off, then got back on the track. I could hear the time and knew I wasn’t going to make it. But I put in a good effort. I was really close and so happy to get to finish on the track rather than get pulled somewhere earlier for a cutoff.”

Ultimately, Barkan would love to return to run the Western States 100 again. He also recognizes he has a long list of other races he’d love to experience, like Cascade Crest 100 Mile and Hardrock 100.

“I enjoy doing hard things for the sake of doing hard things,” he said. “A lot of my motivation and inspiration for trail running and ultrarunning comes from resilience and that sense of ability when you keep pushing. My mind keeps moving to the next and harder thing,” he said.

“So much doubt and isolation comes with vision loss … Pursuing harder things and having a mentality of self-reliance and resilience can help address some of those feelings of self-doubt and that feeling of loss as you lose more vision,” he shared.

Beyond self-confidence, one of Barkan’s biggest motivators for ultrarunning is the people he shares it with.

Call for Comments

• Do you know of other adaptive athletes with an inspiring story like William’s?
• Do you face any unique challenges in your running?

William Barkan: A Journey Through Vision Loss and 100-Mile Racing by Morgan Tilton.