By Mark Giuliucci

CFIDS has stolen many pieces of Paul Hueber— a budding music career, travel and independence, treasured hikes through tranquil woods.

But Hueber knows the illness can never claim what he holds most dear: his creativity. Though he rarely has the energy to leave his home in Altamonte Springs, Fla., Hueber continues to find ways to feed his artistic soul.

“Expression is so important to me,” the 40-year-old says. “No matter what else is happening, I have always felt the need to create.”

These days, Hueber focuses his thoughts, and his camera, on butterflies. With help from his family, he has built a backyard garden designed to attract Monarchs, swallowtails and many other species. He uses a close-up lens to photograph the butterflies as they feed and flutter.

In doing so, Hueber says he has learned an important lesson. Beauty, joy and fulfillment are all around us, he says, if we only know where to look.

It’s wisdom that Hueber says he could have used 18 years ago, when he developed CFIDS. He was a senior at Rollins College in Winter Park, Fla., at the time, and had just finished a bout with mononucleosis when CFIDS symptoms set in.

No matter how exhausted he felt, Hueber willed himself through his last year of school.

“I thought I would just fight my way through it and graduate, then take the summer off, rest and get on with my life,” he says. “But it didn’t work out that way.”

Instead, the symptoms lingered. Hueber kept trying; over the next several years, he worked part-time jobs at the college, at a brokerage firm and at his father’s construction business. “I was real dumb about it,” he says. “I just kept pushing myself. I figured I wasn’t getting better because

I wasn’t trying hard enough.”

What bothered Hueber most was that he had no strength to pursue his music. A guitar player and vocalist, he was part of a band that once opened for the noted jazz-bluegrass group Bela Fleck and the Flecktones. “Music was my first love,” Hueber says. “I wanted to be a musician more than anything else.”

His band tried to space their gigs two or three weeks apart, so that Hueber could recover enough to play. After a while, though, all he could manage was to jam with his friends once in a while.

“I’m good for about 20 or 30 minutes now,” he says. “When I feel good, I can play with my friends. Other than that, I can’t do much with music, and I miss it.”

Photography is helping to fill the void. Hueber had learned how to handle a camera during a trip to Colorado about 10 years ago, using a manual-focus Minolta he borrowed from his sister. But he never took it seriously until he read a magazine story about backyard nature photography.

The butterfly garden slowly took root. He and his family planted lantana, red Penta flowers and other species that provide nectar for the butterflies. They have added milk weed and other host plants, on which the butterflies lay eggs.

Now, butterflies visit the yard from March through November, and even occasionally in the winter months. Hueber is learning more about other garden visitors, too. He has spotted 15–20 varieties of dragonflies, and identified 70–80 species of birds in the yard and overhead.

“It’s like anything else,” Hueber says. “When you start looking at what’s around you, you’re always surprised.”

Hueber says he has been blessed with friends and parents who understand his struggles and want to help. “I’ve been incredibly fortunate,” he says. “I have heard so many stories about people losing friends and family, and that just hasn’t happened to me.”

On good days, usually in the winter, Hueber finds the energy to visit a nearby nature preserve. He can walk half a mile or so before he’s too tired to continue. “Then that’s it,” he says.

“I come home and collapse. Yet I’m still happy I did it.”

It’s a far cry from the hours he spent in the woods of upstate New York as a child. And it doesn’t make up for all the other losses in his life. But Hueber says he is learning to appreciate what he has, instead of ruing what he doesn’t.

“Of course I wish things were different, but they aren’t,” he says. “I can’t change things, and I can’t give myself more energy. I am thankful for whatever I can do.”

Hueber wrote a song recently, one that he says sums up his approach to life. It’s called Winding Road:

“I could learn a lot from oak trees,

Bending when a hard wind blows.

They don’t try to stand to fight it.

Something in the tree just knows…”

“I think it is more of a goal to shoot for, rather than a place where I am yet,” he says. “Hopefully, I will get there eventually.”

Mark Giuliucci is editor of The CFIDS Chronicle.