One step at a time

by Jane Graves

OVERLAND PARK — On April 21, Jeff Benelli will join some 20,000 other people to run the Boston Marathon.

But most of them are not legally blind.

Benelli, who is a member of Holy Spirit Parish in Overland Park, has choroideremia, an X- chromosome-linked genetic disease that causes blindness. A normal field of vision is 180 degrees; he has a two-degree visual field. At a conversational distance, he can see one eye of the person he’s talking with . . . and nothing else.

“You tell people you’re running Boston, that’s one thing. And then you say, ‘I can only see about two degrees in front of me,’ and people say, ‘How do you do that?’” he said.

The 42-year-old qualified for the Boston Marathon after placing ninth in his age division and 51st overall at the North Carolina Outerbanks Marathon last fall with a time of 3:19:29. He’s aiming for a time of 3:10 in Boston and is a contender to place in the top two runners in the visually impaired division.

This is no small feat, since something as simple as walking — much less running — can be hazardous to his health. Open doors, an open microwave, and an unclosed dishwasher have caused him injuries in his own home.
Life for the legally blind, said Benelli, is wondering, “Is this next step going to be a thump, or is it going to get me one step closer to where I want to go?”

INDEPENDENT STREAK

Not too surprisingly, running has presented a unique set of challenges for Benelli. While training for his first marathon, he ran into a stop sign.

“It was more of a mental mistake,” he explained. “You know there’s not going to be a stop sign in the middle of a sidewalk, so stay on the sidewalk. It’s kind of a good rule.

“Fortunately, I had just turned the corner so I didn’t have any speed built up. It did knock me down . . . but I’ve had bigger lumps walking into the microwave. It didn’t hurt me that bad.”

And his official outings have not been without incident. During his second marathon, Benelli almost lost the path through a wooded portion of the route.

When he stopped running and called out, “I’m legally blind and I have no idea which way to run,” another runner came to his aid.

Most of Benelli’s training is done at home on a treadmill, but for runs longer than 11 miles, he walks to a track about a mile and half from his house. He prefers to run in the very early morning, so as not to cut into the family’s time together. But that necessitates him walking to the track in the dark alone — something his wife Julie is none too excited about.

But his determination — and his independent streak — said Julie, are just a part of him.

“I don’t really like when he does that,” she said, “but I’ve learned my lesson: He’s the most independent person that I’ve ever met.

“I get frustrated, because I want to help, but I also understand that in his own way, he’s got to be able to show some independence.”

Brian Hart, a Holy Spirit parishioner and one of Benelli’s closest friends, agreed.

Although, like Julie, Hart would love to be allowed to help his friend out more often, he recognizes that Benelli has always been very independent, and even blindness can’t change that.

“That’s just Jeff. He’ll probably be like that forever,” said Hart.

PATHWAY TO PEACE

But Benelli admits to seeking help elsewhere.

“I read that Serenity Prayer and just absolutely love it,” he said. “There’s a short version that most people know.”

But it’s the verses in the longer version that speak most poignantly to him. (See sidebar at right.)

“I don’t know how many people read that longer verse very frequently,” he said, “but there are some powerful messages in there — accepting the world as [God] would have it, not as I would like it to be.”

Meditating on those lines, Benelli said, is what gets him through the day.

“I would like not to run into stop signs,” he said. “I would like not to have any mishaps.

And, like any competitive male, sighted or blind, “I’d like to win the race,” said Benelli. “There’s a whole bunch of things I would like to have.

“But you know what I really hope and pray to God for, is that if I do run into a stop sign or . . . something bad does happen, that I don’t start blaming him for any of those things.

“I just say, ‘You know what? That’s the way the world works. It’s not Your (God’s) fault. You don’t hate me. You didn’t do this to me.”

Then, one final prayer.

“Help me deal with this.”

“And you know what?” asked Benelli. “I tell you — those prayers work.”

And not just because reciting it calms him down, he said.

“When you’re really, really depressed,” he said, “if you stop and pray — not that the event that is causing the depression goes away — but if you just say, ‘Help me to get out of this mood, I don’t want to be depressed. I don’t want to be mad. I don’t want to be angry. Help me get over that because I don’t want that.’ Those prayers do work.

“Those prayers — whatever it is — they help.”

 NEVER GIVE IN, NEVER GIVE UP

So with the help of his family, his friends, and the Serenity Prayer, Benelli keeps on keepin’ on.

That perseverance, despite the challenges, is exactly what Benelli hopes to teach his kids through his example in marathons.

And in life.

“I preach that message to my two kids all the time,” he said. “It doesn’t matter what your problems are — persevere.”

“Just because something bad happens,” added Benelli, “you can’t stop there and let it consume you. You have to keep pushing forward and try to accomplish things.”

“I hope that’s the message that they take away from this,” he continued. “That no matter how hard things are, you just keep plugging forward and you do what you can to achieve.”

And perseverance, even for a blind runner, has its rewards.

Perhaps especially for a blind runner.

Because success in the Boston Marathon will give Benelli something more than it will give almost any other of the world-class athletes in the race.

It will give him a chance to feel normal.

“After the North Carolina marathon, after I was done, it felt so good,” Benelli said. “I wasn’t visually impaired or legally blind or any of that. I was a normal person. I don’t get that feeling — ever.”

“For that five-hour period, I felt normal,” he added. “Julie and I after the race walked around, and I was either holding her hand, or I had my arm around her, and we were laughing and having fun like we used to do, way back when.

“And to share that experience with her was just, just euphoric. It was just unbelievable.”

It also doesn’t hurt that now his two sons — seven-year-old Jakob and five- year-old Jordan — are old enough to realize what an accomplishment it is to complete a marathon, even for a sighted person.

“They’re proud of me,” said Benelli. “And it feels good for them to look at their dad and say, ‘Hey, he can do something that a lot of other people can’t do.’ Because I don’t get that very often.

“It’s rare that I’m actually the one who can accomplish something that someone else’s daddy can’t.”

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