COURTESY PHOTO Summer Hartzfeld trains with Donna Hudson in Saskatchewan. It will be considerably warmer tomorrow for the marathon.

Marathon walk is blind woman’s latest challenge

The 32-year-old Canadian faces difficult paths with humor and grace

Walking the Honolulu Marathon tomorrow will be yet another challenge in Summer Hartzfeld's life. Fortunately, she could prepare for this one.

As a baby, the now 32-year-old was diagnosed with a rare eye cancer called retinal blastoma. Before she was a year old, doctors removed both eyeballs and one entire eye socket.

"I don't remember seeing anything, so that might be just as well," she said in a phone interview from her home in Saskatchewan, Canada, the day before she was scheduled to travel to Honolulu.

She was given a false eye for her right socket, but her left could not hold one, so it remained empty through her childhood. At a school for sighted children, she wore sunglasses while studying Braille alongside her classmates, who teased her relentlessly.

"I was an easy target," she said softly. To make matters worse, she was removed from her biological parents as a baby due to neglect, and lived in a couple of different foster homes while growing up.

In the 1990s, she was given a prosthetic eye that fits onto two small screws to fill the empty space on the left side. But there are problems with that, too.

The distinct discoloration around the area that makes her look like she has a black eye is evidence that it needs to be replaced -- something that will not happen anytime soon because it's not considered a medical necessity, and is not possible on Hartzfeld's limited budget.

Her plight has made her especially sensitive to the struggles of other young people.

She became inspired to attempt the Honolulu Marathon when she attended a regional Joints in Motion fundraiser, where she heard a middle school-aged girl talk about her battle with arthritis. Immediately, Hartzfeld decided she would raise the necessary $5,500 for Joints in Motion, the Arthritis Foundation's athletic program, to make her inaugural trip to Honolulu and walk 26.2 miles.

"I think it's amazing that someone with as many challenges as she's had is willing to go to such extremes to help someone else," said Cindy Kobayashi, the Joints in Motion coordinator in Saskatchewan. "I find that really admirable."

When she first met Hartzfeld, Kobayashi recalled that she was self-conscious about using phrases related to vision, such as "see you later," and felt guilty every time one slipped out. "But Summer actually has a really good sense of humor, and is able to laugh about her disability," Kobayashi said. "She will joke about it, and say things like, 'I think you look great.' Oftentimes, people don't know how to react because they are uncomfortable. They don't want to laugh for fear of being insensitive, but I think it actually bothers her when they don't laugh at her jokes."

Duane Banman, a trainer from Joints in Motion, will guide Hartzfeld through the event, which she estimates will take about seven hours. She doesn't train as much as she'd like to because it's difficult to find people to guide her.

She would like to learn how to run but said, "I'd have to have a guide who knew what they were doing."

The biggest challenge is that "Summer is completely blind, as opposed to someone who can see shadows," said Banman. "You're going completely on sound and touch," which is why running, with its bouncing and inconsistent arm swing, takes much more practice. But at a slower pace, "all I need to do is provide a stable base for her to walk from."

The partners learned quickly. "There were a few things I thought I should call out and didn't, and then she tripped on them, so we figured it out." Even so, "everything is based on what I see, and she may not understand that."

But Hartzfeld is accustomed to such difficulties. Fundraising, for instance, took on a new level of frustration when she couldn't manage the bookkeeping, and had to rely on Kobayashi -- another walking partner --to help. The Honolulu Marathon confirmation she needed to pick up her race number and timing chip arrived in a printed format in the mail. Because Hartzfeld has lived alone since she was 19, she regularly asks neighbors to screen her mail to make sure she doesn't throw away anything important.

Making ends meet is also a constant issue. Years ago, she tried to attend a university that was ill-equipped to deal with her inability to see what the professors were doing in class, so she was asked to leave. Now she is contemplating massage school. In the meantime, she creates and sells jewelry at a local Farmer's Market, and uses public transportation to get around town.

In her home, she communicates with a "normal" phone, and a special adaptive program that allows her to feel where her cursor is on the computer so she can write and receive e-mails.

For people who want to help, she requests that they ask her first. "As long as they don't grab first and ask questions later," she said. "That's the wrong order." Besides, she noted that if you want to help a blind person get around, you let them hold your arm, not the other way around.

In typical Hartzfeld humor, she considered leaving out her prosthetic eye for the marathon, something she does not typically do in public. Then she reconsidered: "I don't want to have any runners trip over each other because they're looking at me," she said. "The officials would say, 'She's a hazard! Get her off the course!'"

At this time of year, training in frigid weather, Banman said they often smear Vaseline on their faces to prevent frostbite, their water bottles freeze every half an hour, and they have to incorporate indoor breaks every couple of hours to "thaw out."

It's no wonder they're ready to visit Honolulu, where Hartzfeld hopes to smell fragrant flowers, taste chocolate-covered macadamia nuts and seafood, put her feet in the ocean and listen to the sounds of the islands.