The North Carolina Symphony’s assistant conductor anxiously waits for his battle with chronic fatigue syndrome to end so he can raise his baton again.

When he last conducted the North Carolina Symphony, Jackson Parkhurst made a strange, silent promise: If I make if off the stage, he told his failing body, I will never go through this again.

Three years later, Parkhurst is still the symphony’s assistant conductor and director of education. On this day he stands in front of 200 music teachers at the all-day conference he leads each year. It used to be just another date on a busy schedule, not one of a handful of public events in which he still takes part.

The teachers crowd into a basement room in the Raleigh Convention and Conference Center, desperate to hear how – in a world of Hanson and Beanie Babies – they can turn their students on to Mozart. Some know about Parkhurst’s sickness; many don’t. They can all see something has gone wrong.

A number of them approach during the breaks. One teacher tells Parkhurst that her mother was misdiagnosed with chronic fatigue syndrome for what turned out to be multiple sclerosis. Another suggests a book called Christ the Healer.

Others simply ask whether Parkhurst is close to again leading the symphony.

"When you care about someone," says Gilda Cauley, a teacher from Nash County, "you want to keep up."

Here, after all, is the man known for his spirited performances at the symphony’s Young People’s Concerts – which he has conducted since he was hired in 1980. Then, he might saunter onto the stage with a boom box held to his ear of play the perfect straight man to Ira David Wood’s over-the-top Bach. All to keep an auditorium of antsy kids focused on the music.

"His enthusiasm’s the same, but his stride is slower," Cauley says.

She isn’t the only teacher to notice the pale cheeks and stiff walk. Near the end of the day, leaning on a chair for support, Parkhurst gives in to the requests for an update.

"I’ve still got it," he tells the teachers. "It’s a perfectly dreadful condition. I was told, ‘The good news is you’re not going to die.’ A pause. ‘And the bad news is you’re not going to die.’"

The room fills with laughter, the ice melted by the dry, perfectly delivered one-liner.

"I’m encouraged that I will one day recover," he says. "I hope it’s tomorrow. I hope it’s this afternoon."

A breath of time passes. A roomful of teachers applauds.

The misunderstood disease
It is a comforting moment, a show of support in a time of need. But it’s not what the conductor seeks. He wants to earn his applause, to hear it as he walks on stage, shakes hands with the players and takes his position in front of the orchestra. He wants to be a performer, not an inspiration, to feel the sway off a symphony with every flick of the wrist.

At 54, Parkhurst is struggling with chronic fatigue and immune dysfunction syndrome, a disorder that has, over more than four years, sapped his strength. There is no cure or treatment. CFIDS arrives and disappears without warning. And in this cynical world, the illness comes with an unpleasant complication: those who doubt it really exists.

At first, chronic fatigue was known as the "yuppie flu" because it was reported mainly by people with money and an education. A 1988 report issued by the University of Washington – based on a study of 44 people – blamed it on depression. (Many scientists now believe it is caused by a virus.) For a time, CFIDS was mistakenly linked to Epstein-Barr, which causes mononucleosis.

Even with CFIDS recognized by the Centers for Disease Control and outed by high-profile victims, including Cher and the late Gilda Radner, the doubters remain. In April [1997], Elaine Showalter, an English professor at Princeton University, published Hystories – Hysterical Epidemics and the Modern Media. Columbia University Press, her publisher, pushed the book with this blurb: "During the past two decades, chronic fatigue and Gulf War syndromes, tales of alien abduction and satanic ritual abuse, and recovered memories of childhood abuse have gained widespread acceptance through massive media coverage, books and even scholars and the government. … Showalter challenges the legitimacy of these claims; in fact, she argues, it’s all in our heads."

Which is hard to believe after hearing Jackson Parkhurst’s story.

‘A haze in my head’
Parkhurst remembers the first time, a Sunday in church – May 9, 1993 – when something made him so weak he didn’t think he could stand. But he did. After lunch, he felt better, and by the next morning, whatever it was seemed to have passed. On Tuesday, it came back and he struggled through a concert at the State Capitol.

"The overwhelming feeling that day was hunger, a ravenous hunger," he says. "And no matter what I ate, I was still hungry."

Parkhurst had a turkey sandwich in a cooler in his car. He ate half in the Legislative Building, half in the parking lot. He knew, by now, this wasn’t an ordinary flu.

"Sort of a haze in my head," he says. "My muscles hurt, I was sensitive to light. I felt bad all the time but still, I didn’t think I had any alternative but to keep going."

Another Sunday, a week after the first attack, he sat at the piano for more than an hour and felt better. So it went for weeks. Off and on.

In early June, a doctor diagnosed a stomach ulcer. Parkhurst started taking Zantac and had a good week. He remembers twisting on stage at a Summerfest concert. He recalls another crash. The cycle continued through July, when CFIDS moved in for good.

For the next year, from late 1993 until November of 1994, Parkhurst continued to work, handling his administrative duties and the 65 to 70 concerts he conducted. Then his condition worsened.

"I wish I could describe it better, but it just felt like I had been injected with some poisonous substance," he says. "Everything fogged over. I went into a mental fog. My skin crawled. I had trouble keeping my eyes in focus."

There were good weeks and bad weeks, the bad worse than ever.

"That really scared me because I thought, ‘What if I have to do a concert like this?’" he says.

It happened at a Saturday night pops concert in Wilmington and again four months later.

"I remember standing there being sure I had something to hold on to, a chair, a rail, that I could get in chase I needed it," Parkhurst says. "I started thinking then that this can’t go on."

Two weeks later – on April 10, 1995, – at an education concert in Mount Olive, he crashed.

"I realized during the concert that if I can just get through his without collapsing, then I have to stop. Until that point, that was an unthinkable thought."

Music and loss
From the start, whatever he was facing – bad grades, divorce, illness – Parkhurst always had music. It is his earliest memory, from when he and his mother, Olivia, lived with his Aunt Mimi and Uncle Milton in a small house in Greenville, S.C.

"I used to assume everybody had an aunt who taught piano in the living room," Parkhurst says. "There was music everywhere."

His father, Clarence, was an Air Force pilot. He married Olivia in January 1943 and shipped out two months later to fly "The Hump" from India to Burma to China. He bombed the Japanese in the gulf of Tonkin. He didn’t return, the first loss for his son.

Parkhurst started taking piano lessons when he turned 8. After his mother remarried in 1946 to Charles McGee, an English professor at Clemson University, Mimi and Milton would take their nephew to the university’s music series. He heard 40–60 concerts in 10 years.

"I remember that feeling of hearing a symphony orchestra for the first time – that this was the most important thing in the world, that this was what it was all about," Parkhurst says.

Despite his piano teacher’s protests, he played mainly by ear, including the first record he ever bought, Beethoven’s Moonlight Sonata. As he grew older, whenever he felt out of place, Parkhurst could always turn to his music.

"I had friends, but I also spent a lot of time alone," he says. "I was interested in music. I was interested in theater and the arts. All my contemporaries were interested in sports, which I could not do."

But this was the age of Sputnik, when everyone wanted to be a scientist. At Darlington, a boarding school in Georgia, Parkhurst graduated with honors at the top of his class, excelling in chemistry.

"I could be a musician as long as, I remember the expression, "I had something to fall back on,’" he says.

He entered Duke University in 1961 as a premed chemistry major, but he struggled and eventually flunked out. He returned to Duke soon after and changed his major to music. As part of the program, each student got to conduct the Duke Orchestra for 10 minutes.

"It was blind terror," he says. "To me, those people were like gods, not when they were off stage, but when they were assembled."

Still, he did something none of his classmates would have dared: He stopped the symphony. There was something Parkhurst didn’t like about the way the flute was being played, so he asked the player to phrase it differently.

Later, he went to Julia Mueller, head of the department. "I need to know what you think. Do I have any aptitude?" he asked her.

"Your stick technique wasn’t very good," she told him. "But I was astounded at the music that was in you."

After graduation in 1967 and a couple of years as assistant conductor at the North Carolina Symphony, Parkhurst headed to New York, studying at the Manhattan School of Music. He was married for a time, then divorce. While he struggled to find work as a conductor, he did stints as an usher at Avery Fisher Hall and a clerk at the John Jay College of Criminal Justice. In 1976, Parkhurst left the Big Apple for Brevard, a small town in Western North Carolina.

Which is where he met Ann Vorus, on a mountain in the middle of nowhere.

A quick courtship
Ann Vorus was 32, a recently divorced former ballet dancer with a daughter, Eliza. She went to a lunch thrown by her Aunt Maner, who also invited the young man written up in the local newspaper for starting a chamber orchestra.

They met in September and married at the Transylvania County Courthouse on Feb. 24, 1978. She kept her maiden name, and they didn’t even wear wedding rings for the first few years.

In Raleigh, where they soon moved, Vorus started a ballet school. Parkhurst was hired by the symphony. A perfect match. Then came the disease.

"He used to be afraid I was going to leave," Vorus says. "But the essence of Jack hasn’t changed. I mean, he’s in a sick body, but jack’s still there."

Parkhurst says he never really thought she would go. "But I know how horrible chronic fatigue can be," he says. "I wouldn’t want to be with somebody who was sick all the time."

Loss, he admits, is one of his issues, from the literal loss of a father who didn’t come home and a wife who walked out to the psychological loss a young son felt when his mother remarried. Now the lost identity of a conductor who no longer conducts. So he copes.

Vorus can tell when he’s not well. His skin turns gray and hangs on his face. His spirits fall.

"He used to be funnier than he is right now – that’s what I miss the most," Vorus says. "Sometimes, on his good days, I’ll turn and say, ‘It’s good to have you back.’"

A race against stopping
When you have an incurable disease for which there is no known cause, you begin to remember everything – how you slept, what you ate. There are times when you don’t so much live your life as study it.

Late in 1994, Parkhurst started recording his condition on a calendar. A circle is a good day; a shaded-in square is bad; a darker square is worse. The anniversary of his first attack, May 9, is outlined with a green marker.

The good days bring hope, if only for an afternoon.

"It’s like there’s been rainy, cloudy weather for a week and then the sun peeks through," says his stepdaughter, Eliza Berry, 28. "And it’s only there for a few hours, but that’s what makes it possible to think of him as what he used to be rather than what this illness has done to him."

There were times when Parkhurst ate nothing but brown rice and vegetables, times when he cut out wheat, dairy products and all carbohydrates. He has had his blood checked for parasites, his thyroid tested. He has been to see a specialist to rule out allergies.

Then there are things he has heard of but won’t do: Dope his blood with vitamins or hydrogen peroxide, submit to a doctor who takes urine, saliva and blood, does something and returns them.

Parkhurst tries anything within reason, never forgetting the sad reality: that everybody has a cure when the disease is incurable.

There have been small, important discoveries. No long, hot showers: the heat revs up the immune system, already working overtime with CFIDS. No sweet tea: the sugar does bad things. No morning naps: they give him headaches.

And he has found a doctor, Chuck Lapp, once a family practitioner in Raleigh and now a CFIDS specialist in Charlotte. Lapp met Parkhurst long before he got sick. His wife, Darie, and Vorus worked in the ballet company, and the couples would sometimes see each other at parties.

Then Parkhurst and Lapp found something else in common.

Lapp first encountered CFIDS in 1984, before it had a name. A business executive had come down with a terrible illness. He would work for a day or two and then be stuck in bed. At the same time, Lapp read about an epidemic in Lake Tahoe, people suffering with the same symptoms. By the early ‘90s, Lapp had decided to focus on CFIDS. Today he treats about 2,000 sufferers in 49 states and nine countries, and he represents The CFIDS Association of America on federal panels. His clinic is [among] the first to get Food and Drug Administration approval to test Ampligen, a drug he things will fight the illness.

Although there is not test to confirm CFIDS, Lapp says the symptoms are easy to recognize.

"A sleep researcher at the University of Toronto said it best: ‘It’s like listening to the first few notes of a Beethoven symphony,’ Lapp says. "You hear da-da-da-da and you know everything that’s coming next."

Life, for Parkhurst, has become a race against stopping, to keep CFIDS from landing him into bed.

In the morning, he usually feels like he’s made of wood. So he stretches and, even in rain, walks at least half an hour. On the worst days, he’ll work crossword puzzles. Every day, from 5 to 6 p.m., he meditates or takes a nap, and on most weeknights he coods a stir-fry or pasta dish. After dinner, he and Vorus might watch a movie.

At times the disease seems to retreat, a reminder that most patients get better.

"It usually takes years – the average is five or six – and most people spontaneously recover," Lapp says.

The symphony waits. For three years, it has held his slot open. The bulk of his duties are covered by associate conductor William Henry Curry. There are also guest conductors and concerts led by bass trombonist Terry Mizesko.

"As far as I’m concerned, Jack is one of the best music educators and conductors of educational concerts that I’ve seen in this country," says Gerhardt Zimmermann, the symphony’s conductor. "I fully expect him to get over this."

Those hopes are what keep Parkhurst going, even when every up inevitably brings a down.

"He says, ‘Before I die, I want to feel well again,’" Vorus says. "Why do I think it’s going to be gone? Because the alternative of thinking it’s not going to be gone is not right for Jack.

"He just wants to feel well again."

Reprinted with permission of The News & Observer of Raleigh, North Carolina.