Gulf War Pilot Trains Sights at Link to ALS

He has something to say, so he begins by slowly, deliberately, blinking his eyes to spell each word, letter by letter.

Michael Donnelly sits in his den, jokingly dubbed the “I love me room,” filled with mementos of his days as an Air Force fighter pilot. His helmet and leather jacket. Pins from bombs he dropped. A thumbs-up photo in his F-16, a jet so sleek it’s called the Maserati of the sky.

And rows of medals, of course, several for 44 combat missions he flew in the Persian Gulf when he roared through the clouds and swooped down to strike enemy targets.

That was his world 11 years ago.

Today his world is his house, a wheelchair, a feeding tube, a ventilator.

At 43, Michael Donnelly has ALS, known as Lou Gehrig’s disease, a mysterious, relentless illness that has robbed him of his ability to walk, talk, swallow, even breathe on his own.

So he “speaks” with his eyes: He strings together words by blinking when the appropriate letter is spoken.

ALS has turned Donnelly’s body into a prison, but it has not destroyed his spirit or his determination. He and his family waged a five-year battle to convince America’s military that his illness is traceable to his service in the Gulf War.

And finally, some success.

The Department of Veterans Affairs recently announced that Gulf War veterans were nearly twice as likely as other military personnel to develop Lou Gehrig’s disease--marking the first time it linked service in the region to a specific illness. A tiny group of ALS veterans received their first benefits this month.

Donnelly’s father, Tom, a blunt-spoken former Marine who is now a lawyer, calls his son a hero.

Michael Donnelly brushes aside such talk.

“I am,” he says, spelling with his eyelids, “just a regular guy in an impossible situation.”

With his athletic good looks and cool confidence, Michael Donnelly could have stepped out of a recruiting poster.

“This guy, if you drew a picture of what an Air Force pilot would look like, it would be him,” says Ed Houle, Donnelly’s former commanding officer. “He was a great physical specimen, sharp as a tack, with a great attitude.”

At 6-foot-2 with sandy blond hair, blue eyes and a thousand-watt Tom Cruise-smile, he was a real-life “Top Gun.” Type-A personality. Nerves of steel. An air of invincibility.

Once during the war, Donnelly says in his memoirs, “Falcon’s Cry,” he tried to release 8,000 pounds of bombs strapped to his wings, but something stuck. They wouldn’t drop. Landing with live explosives, he thought, is like skimming a crate of eggs across a driveway at 300 mph without breaking a single one.

But he did--without breaking a sweat. “It just wasn’t my turn,” he wrote.

Donnelly--Big D in his squadron--loved being a combat pilot. The hum of the radar warning, the shudder of the jet as bombs dropped, nothing could beat that rush.

After the war, everything changed.

While a flight instructor at Sheppard Air Force Base in Texas, Donnelly became ill. He had trouble breathing. His right leg began dragging. In early 1996, he fell backward climbing a ladder to a jet.

He never flew again.

At first, a doctor said it probably was stress. Later that year, Donnelly was diagnosed with ALS, or amyotrophic lateral sclerosis, a neurological disease that progressively destroys motor neurons.

Lou Gehrig’s disease, named for the New York Yankees Hall of Famer stricken with ALS, kills most people within two to five years. The cause is unknown. There is no cure.

And it is rare: About 5,000 people are diagnosed each year, most in their 60s and 70s. Donnelly was diagnosed at 37, the age at which Gehrig died.

ALS is a slow-motion death. It paralyzes your muscles until you’re locked into your body, unable to communicate with the outside world. All the while, your mind remains alert.

And Donnelly’s is.

His gaze is intense, his wit sharp, his comments perceptive and honest, even painfully so.

He jokes about his beloved Boston Red Sox, follows the war news, and downloads music, does his banking and shopping via computer (he can manipulate a specially designed mouse command attached to his headrest.)

“He’s very present,” says his sister, Denise. “He can still command a room.”

But there’s a cruelty in his very alertness. So many things he loved--jogging, riding a dirt bike, flying, boating with his two kids, now 14 and 10--are just memories in a photo album.

“Obviously, this sucks,” Donnelly says, looking at his wife, Susan, his junior-high sweetheart. “Sometimes I give up. But always, I come back.”

At first, Donnelly was determined to fight his illness.

He went to a chemical sensitivity detoxification clinic, ate macrobiotic foods and traveled to Germany, where a doctor claimed to have cured people with multiple sclerosis. He even took fen-phen, the weight loss drugs linked to heart problems--prescribed by phone.

“Sure, it was desperation,” his sister says. “You want to believe something is out there that might be that magic thing that will save you.”

Donnelly and his family became convinced his illness was somehow connected to missions in which he dropped bombs on chemical plants and munitions depots in Iraq, then flew back through toxic plumes rising from the targets.

They also note that he became sick at the Texas air base after he jogged through a cloud of the pesticide malathion, used to control mosquitoes. Could that exposure, years later, have triggered the disease?

Dr. John Feussner, the VA’s chief research officer, says while some chemicals and pesticides are associated with nerve damage, so far there isn’t much evidence they can cause ALS.

But he didn’t rule out anything. “Exposure to chemicals is a fair question and we should try to answer that,” he says.

The government’s study that found higher ALS rates for Gulf War vets doesn’t say how they got the disease.

But Dr. Robert Haley, who has studied sick Gulf veterans for eight years, including many ALS cases, says several studies already have linked pesticides or farming to the disease. The importance of the Texas exposure, he says, is unclear--it could be a “red herring or . . . an inciting event.”

Haley also points out that during the Gulf War, the military protected troops from insect-borne diseases by “spraying copious amounts of pesticides. . . . It was widely believed they were safe.”

As Michael Donnelly’s cane gave way to a wheelchair, he and his family pressed on.

It was strange at first, taking on the military.

As a young man, Tom Donnelly flew the Marine Corps flag beside the Stars and Stripes. His four children greeted him nightly by lining up on the steps, Von Trapp family style, and singing the Marine hymn.

Even Michael, who rose to major in the Air Force, was hesitant. “I was,” he says, “a reluctant warrior.”

But they joined forces.

His mother, Rae, became the medical researcher, phoning doctors and foundations. His father and his sister, Denise, became the agitators. They made hundreds of calls and wrote hundreds of letters until powerful people in the VA and the Pentagon and on Capitol Hill knew their names.

They also tracked down other ALS Gulf veterans and designed a medical questionnaire for them.

Once all three even picketed a speech by retired Gen. Norman Schwarzkopf, the Desert Storm commander--much to Michael Donnelly’s chagrin.

In 1997, Donnelly, his blue uniform bedecked with ribbons, testified on Capitol Hill, claiming the military was trying to cover up and trivialize Gulf War illnesses.

“Remember,” he said, his words already slurred as his throat muscles were wasting away, “I am not the enemy.”

It pained him to be there.

“Michael was always the good guy,” says his wife, Susan. “He would go out of his way to make people comfortable.”

In 1998, Donnelly, with his sister’s help, published his story. H. Ross Perot, who has bankrolled research on Gulf War illness, helped get them on Larry King’s show.

“I had this illusion that writing this book would be saving his life somehow,” Denise says. “We really felt rushed. I thought, maybe if we can just get the word out, somebody would read it and know what to do and the government would find a way to fund the research and find a cure.”

Instead, there was nothing.

Well, not exactly nothing.

That fall, at a Gulf War conference, Denise recalls a Pentagon official knelt, looked into Michael’s eyes and said, “I’m going to do everything I can to help you.”

By then, Donnelly had a voice synthesizer. He typed a message, repeated by a mechanical voice: “Save my ass. Don’t kiss it.”

Science was stacked against Michael Donnelly.

Three government studies in the 1990s had not found any link between Gulf veterans and neurological illnesses. But his family refused to go away.

“You couldn’t help but be impressed with their passion,” says Feussner, the VA researcher. “They were desperately trying to find a treatment for their son and they simply wanted to know as best as they could whether there was an association or not.”

After meeting the Donnellys and veterans groups, Feussner asked for a review of earlier data. It found that ALS victims were younger than expected.

A new, exhaustive study was ordered and preliminary results announced in December 2001 found ALS was nearly twice as common for Gulf veterans as a group, compared with members of the military not deployed in that region. The rate was 2.7 times higher for those who had been in the Air Force.

Since the disease is rare, the numbers are tiny: 40 among 700,000 people in the Gulf, compared with 67 in the non-deployed group of 1.8 million.

Feussner calls the rate “statistically significant” but acknowledges there was a sense of urgency in connecting the disease to the war, because it paved the way for benefits.

He says VA Secretary Anthony J. Principi didn’t want to wait up to a year for the study to appear in a scientific journal, knowing the disease already had killed half the ALS-stricken vets.

The VA decision provides disability and survivor benefits to ALS veterans and their families.

Money was never the issue for Donnelly. Because he became ill while on active duty, he received disability benefits.

But Joshua Calderon, a 44-year-old former Army medic in the Gulf, was retired when diagnosed with ALS in 1997. He says he was denied benefits three times.

“I felt abandoned . . . like I was fighting the same war at home,” he says.

He credits Donnelly for the benefits he’ll receive. “If it wasn’t for him,” he says, “this would have taken a lot longer.”

The family’s role also was recognized when the VA announced the change: That day, Principi phoned Donnelly’s father.

And Pat Eddington, author of a book on Gulf War illnesses, says the campaign by the Donnellys made a huge difference. “It was just raw, relentless, determination to get an entire agency . . . to change its position,” he says.

Donnelly says he feels vindicated not just for himself, but for others. He says nine of his 40 squadron members are ill or have sick family members.

The ALS study continues, but Feussner says it will be hard to establish a cause because there are so few cases and not much information about exposure.

Feussner also notes that just because a study says something doesn’t make it so. It’s important, he says, to have your work replicated by other scientists.

“There’s no question that would give it more credibility,” he says. “But that will take years.”

A battle has been won, but for Donnelly, life doesn’t change.

Being tethered to machines, knowing ALS is a death sentence--those pressures remain.

“In the war, it was only a short time under fire,” he says. “This is full time.”

But he is thrilled by the VA’s decision. He and his family hope it will be a step toward a cure.

“This confers dignity on him,” says Denise Donnelly. “It’s his legacy.”

In his den one winter afternoon, talk turned to the air attacks on terrorist camps in Afghanistan. Would Donnelly like to be in the cockpit, his hand on the controls, high in the skies on the front lines again?

Slowly, he spells: “In a New--”

Tom Donnelly anticipates what’s next, and bursts out: “In a New York minute!”

The father barks a laugh.

His son’s face lights up.

Michael Donnelly can still command a room.