Seeing What's Important
By Tony Bartelme

Saturday, May 6, 2006

Arnold O'Neal is going blind. Right now, inside his eyes, cells are falling apart way too fast, clogging blood vessels that feed the photoreceptors, those tiny detectors on his retina that let him see the light on his wife's face. He figures he has a few years left before everything goes black.

* * *

When will we untie the dock lines? Arnold, 41, and Bobbi Jo, 36, couldn't seem to leave. Sure, they were committed to their plan — traveling for a year while Arnold still had some sight. They had bought a pokey 36-foot Gulfstar powerboat and named it Imagine. They had sold a car and held three yard sales to help pay for their voyage. They had become masters of eBay. But it was Arnold, the perfectionist, who kept delaying their departure. What about the hurricanes? What about the barnacles on the hull?

Comfort can generate its own gravity, and Arnold and Bobbi Jo sometimes felt weighed down by reasons to stay put. They lived in a quiet neighborhood in Mount Pleasant, close to parks and pools. Their 9-year-old son, Taylor, would miss his friends. They liked their jobs: Arnold was a sound engineer for Seacoast Church, Bobbi Jo was a deputy coroner. And wouldn't it be safer on shore? What if Arnold walked off the deck, or a dock? Fear is a heavy anchor.

Finally, it was Bobbi Jo who announced that it was time to go. As a coroner she understood perhaps better than most the question we all face: Given a finite life, what do you with your time?

* * *

So on a cool Sunday morning in October 2004, they untied the lines and steered Imagine into the Intracoastal Waterway. First stop, Beaufort.

You wouldn't think they had seawater in their veins. Arnold is a heavy-set man with thick black hair salted with gray and styled in a way Elvis might have liked. He was born far from the coast in Cooleemee, a tiny cotton-mill town in central North Carolina. His first love was music, not the sea. In high school he made a guitar in woodshop when all the other kids made gun racks. He went to college in Nashville, playing some guitar but paying the rent working the soundboard.

It was in college that the dream began to take shape. "Back then I liked 'Miami Vice.' I thought, hey, Crockett lives on a boat, and that's pretty cool." He took a sailing class and bought a 13-foot sailboat. After college he began working with country and Christian music groups. Someday, he thought as he traveled from town to town, I'll be living on a boat.

Bobbi Jo was born a landlubber too. She grew up in a farm town in Iowa. She has curly hair and a big smile. In college she studied nursing and did some acting on the side. One of her friends was a talent scout, and one night this friend asked if she wanted to go see a band. Why not? That night Bobbi Jo met Arnold, who had just finished setting up equipment for the gig. She smiled, he smiled. After the show they walked around town until 3 a.m., and at some point he asked, "Do you think you can live on a boat?"

When Arnold was 15, his family told him he would probably lose his sight. He had a genetic disorder, they said, so he'd better get used to the idea of going blind. Funny, he didn't give it much thought until he met Bobbi Jo. Blindness was a ship over the horizon; why worry about something you can't see?

But he wanted to marry this woman, and now the horizon was all he could think about. So he told her he had retinitis pigmentosa. His brother has it, so did his mother. He told her that it would take away his night vision first, then his peripheral vision. Then he would see things as if looking through a straw. Then even that small circle of light would disappear. About 400,000 people in the United States have this condition or related diseases. No cure exists. Looking at her with his brown eyes, he said, "Bobbi Jo, here's your chance to leave."

She stayed. He's overreacting, she thought. Surely there's a doctor out there who could help him. "I'm an optimistic person. I just thought I could deal with it," she said.

After they were married she learned more about the disease, and how advances in genetics might someday lead to a cure, but how funds were scarce for research into rare diseases such as retinitis pigmentosa. She and Arnold helped organize a regatta in Nashville, Sail for Sight. She caught his bug for the sea. They moved to Charleston to be near the water. He sold boats for a while and then found a job at Seacoast. And for many years, Arnold's sight was fine.

Then about eight years ago, the night vision started to go. Three or four years ago, his peripheral vision went. He began to bump into things more. One time he fell at church in front of 1,300 people. Driving became more difficult, then dangerous. He and Bobbi Jo talked more and more about chucking it all and living on a boat while he had some sight left. Bobbi Jo pushed the hardest.

"When you love someone, you want their dreams to come true."

* * *

They made it to Beaufort their first night and had dinner with friends at a waterfront restaurant. But the next morning, with their friends gone, those doubts and fears began to anchor them once again. Can we really do this? "Untying the dock lines always was the hardest part," Bobbi Jo said.

But they did, and headed south. One night, with the sun already down, they pulled up to a dock in Jacksonville. A police officer told them they had to have permission to tie up and ordered them to leave. Arnold told him, "You don't know what you're asking us to do." It was almost dark, and they didn't know about any other places nearby to tie up. The officer was adamant. "I'm going back to my car for 10 minutes, and when I come back, you better be gone."

Arnold felt a jolt of anger and frustration. Someone was ordering his family into the darkness, and he couldn't do anything about it. He walked back toward Imagine but fell flat on his face. Taylor told the officer, "My dad doesn't see so well." The officer finally came around.

And then there was the night they anchored in Miami and Arnold half-heard, half-felt that something was amiss. He walked onto the deck and realized the boat had broken loose and was about to hit a sailboat. They brought the boat under control, but the thought that they were floating aimlessly in a busy harbor at night gave them chills.

But then there was the thrill of crossing the Florida Gulf, listening to shrimplike creatures in the Everglades eat the barnacles on their hull, and watching the sunsets turn everything orange and pink and purple. And there was the day Bobbi Jo surprised him on his 40th birthday with a seaplane ride over the Dry Tortugas, or just spending time with their son. How lucky they were to have this time while he's young! And if they ever doubted what they were doing, all they had to do was talk to other cruisers, most of them retired, who told them, "I wish we had done this while we were young."

* * *

They returned last spring and immediately took off in an RV for the West. Two months and a blown engine later, they were back in Mount Pleasant, thirsting for more adventures. "There's not a day that passes by that we don't think about getting back on that boat," Bobbi Jo said. "There's just so much to see!"

Arnold's eyes have never been worse.

He has tunnel vision now, and even in the circle that's left, he sometimes has trouble making out people when the light is weak. He talks about using a white-tipped cane soon. He knows that in a few years he won't be able to see the 1,200 buttons on the soundboard, and that his days as a sound engineer at Seacoast are numbered.

But he's taking classes at a massage school so he'll have work when he's blind, and he and Bobbi Jo are planning another adventure, probably on the Imagine.

So sometime soon, while Arnold can still see a bit of sunset, or his son look up to him, or his wife's broad smile, he and his family will untie the dock lines and set off once again.


Popular posts from this blog

Cougars in South Carolina

One Brain at a Time - Chapter 1

Bad Faith and Long-Term Care Insurance