RETURN TO TABLE OF
Snapshots of CFIDS
Spirit takes flight on butterfly’s
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
No matter how exhausted he felt, Hueber willed himself through his last year
“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
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
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
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
“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
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.