By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
On September 2, 1993, Candice Roark's heart stopped. She was in a hospital bed, hooked up to a monitor to see why she was blacking out three or four times a week. Suddenly the line on the screen fluttered and went flat. Medical staff later told her they thought one of the electrodes had come loose; it took them a while to figure out she was, legally speaking, dead for about 10 seconds. "I even had one of these strange dreams, with white light and everything," she says with an awkward smile. "I don't normally tell people this, because when people say it on TV it sounds really crazy."
Roark has reason to feel sensitive about being called crazy. Doctors suggested as much when she first came to them, a 20-year-old Air Force mechanic fresh from the Gulf who complained of fainting and breathing trouble. She had a psychological condition, they told her. It would go away. Later they talked about her period, stress, tropical diseases. One day, she says, a doctor at the VA suggested that what she had "looks just like Gulf War Syndrome. Were you over there?"
Almost 700 local Gulf War vets have signed up for a VA registry to monitor illnesses arising after Operation Desert Shield/Desert Storm. Nationwide, the number is up to 80,000 vets and active-duty troops, or about 10 percent of the 700,000 U.S. soldiers sent to protect the oil fields almost five years ago.
The vets' symptoms are of the vague yet unrelenting variety that characterizes contemporary mystery diseases: fatigue, headaches, rashes, pains. Some got sick after a rocket exploded near where they were stationed, others after taking experimental drugs. Some didn't develop symptoms until after they came back. Pentagon officials say they don't know of anything in the "clean little war" that should have caused mass sickness. Doctors say they can't pinpoint one disease, let alone its origins. For that matter, it's not even clear the vets have something civilians don't--which is reassuring only at first glance.
When Saddam Hussein's troops first massed on the Kuwaiti border in the fall of 1990, Roark was stationed at Zweibrucken, Germany, with the 26th Equipment Maintenance Squadron. Her dad was a Marine and she'd signed up right out of high school. Her physical condition was certified as "excellent" when she went in. The only health problem she'd had was low blood sugar as a child.
At the German base, mechanics cleaned the equipment with a component called methyl ethyl ketone, a nerve toxin you're supposed to use with gloves, a mask, and an apron. "We were just dipping our hands in it, up to our elbows," Roark remembers. She passed out a few times from the fumes, but didn't think much of it.
She volunteered for the assignment to the Gulf and ended up with an Army unit a few miles from the Kuwaiti border in Saudi Arabia. They worked 12 hours a day, plus guard duty, and slept 18 to a tent. At night someone would bring out a "really trashy love novel," and read it aloud to a chorus of whoops, grunts and oinks. She remembers it all as rough, scary fun.
Christmas eve, Roark and some others were going from tent to tent caroling when one of the Army guys came to say an Iraqi attack was expected, and everyone tried on gas masks. Roark's didn't fit. A guy offered her his, but she declined. She was "really, really scared. I had guard duty, and I kept thinking, I'm going to die tonight." The next morning they heard the attack was called off, and Roark got a good gas mask.
A couple of weeks later she began getting "these really strange chest pains. And blackouts. They helicoptered me over to a MASH unit because I kept passing out." Routine tests didn't find anything physically wrong with her. "They forwarded me to another MASH unit. There they told me they couldn't send me back because I had a psychological condition. They said they were under strict orders not to release anybody out of that country with a mental problem."
Eventually, the medics discovered that Roark was two months pregnant. She was sent to a base in Turkey, where she delivered her son in August 1991; 16 months later her four-year tour ended with the rank of sergeant and a dozen awards.
But the chest pains and fainting spells continued. She almost quit driving, worried she'd pass out at the wheel. Military doctors still couldn't find anything wrong, and Roark tried to will herself well. "I kept thinking, if I want to be healthy so bad, why is my mind still doing this to my body? I would run, and exercise, and a lot of times I would still get these pains and I'd end up just lying there."
It was at a civilian hospital, Trinity Medical Center in Dallas, that her heartbeat flatlined on the monitor. Doctors put in a pacemaker the next day; she was 22. The pacer has kept her going since, though she still has attacks in which she can't breathe, along with coughs and unexplained fevers.
Roark's story isn't as dramatic as those of some other vets. She's working full time as a stockbroker; her son's healthy, and she has enough energy left over to take night classes preparing for medical school, where she hopes to study cardiology. But there's a hint of terror beneath her exuberance; it surfaces briefly when she talks about another vets she's met, with symptoms like hers, who got referred to psychiatrists. It gave her the idea of starting a vets' network, named Alpha Projects after a concept she learned in psychology class: "There are two basic mistakes a doctor can make when a patient comes to him. The beta error is that the patient is not sick, but the doctor treats him anyway. The alpha error is that the patient is sick, but he doesn't get treatment. The alpha error is the most dangerous kind to make."
The stories started surfacing soon after the war ended in a flurry of yellow ribbons and breathless commentary. A group of Navy Seabees who'd served together in the Gulf, then scattered around the country, was coming down with ugly rashes all over their bodies, accompanied by fatigue, strange pains, and fevers. Doctors speculated that the soldiers had a microscopic blood parasite called leishmania, transmitted by sand flies so tiny they can penetrate mosquito netting. But only one of the 79 ill Seabees tested positive for the bug.
Then there was the unit in Mississippi, where of 54 children born in the two years following the war, two-thirds had what news reports called "serious and unexplained health problems"--from blood diseases to breathing problems, fused fingers to club feet. Studies found no statistical abnormality, and doctors insisted there was nothing physically wrong with the kids' parents; most likely, they were having trouble adjusting to life back in the States.
Soon, soldiers were coming in to their doctors all over the country, complaining of night sweats and headaches, muscles that hurt and a fatigue so profound they couldn't make it to the grocery store. Relax, many say they were told. Take some Prozac. Get some counseling.
For those who suspected something more ominous, the first possible culprit seemed right at hand. A big part of the frenzy leading up to the war, after all, had been warnings that Iraq was armed to the teeth with chemical and biological weapons. And though the Pentagon denied that Iraq dropped anything like that on U.S. troops, returning vets talked about chemical alarms going off constantly, sending them scurrying to bunkers with their gas masks on. Some said they smelled a funny odor or felt their eyes and throats burn when an explosion took place nearby. Others claimed they saw herds of camels and goats lying dead in perfect herd formation, with an odd lack of flies around the carcasses. A few mumbled about a highly classified "Operation Desert Sword," and about secretly disposing of "contaminated bodies."
In 1993 Don Riegle, then a Democratic U.S. Senator from Michigan who headed the Senate Banking Committee, began a series of investigations into what was coming to be known as Gulf War Syndrome. He was suspicious of the official denials, Riegle said, for a number of reasons, including his long experience in Congress: "I've seen our Government lie to us in other war situations." This was shortly after the committee had learned that for much of the 1980s U.S. firms had been selling Iraq components that could be used to make chemical and biological weapons--like anthrax and botulism germs--with the blessing of the U.S. government. (Several thousand vets have recently signed up for a $1 billion class-action suit filed in Texas against some of those corporations.)
One thing Riegle and others wanted the Pentagon to explain was a report, first made public shortly after the war, that a Czech chemical-detection crew had found traces of the nerve gas Sarin during the early days of the war. The Pentagon said it didn't know what to make of the reports, but called them "credible"; for one, the Czechs' equipment was more sensitive than the hardware the U.S. military was using. (Coincidentally, a report by Congress's General Accounting Office pointed out that U.S. battlefield detectors were mostly "rudimentary," developed in the 1970s and no match for contemporary weapons.)
On the issue of chemical-weapons alarms, a Pentagon expert testified that 14,000 of them had been set up in the Gulf during the war, and most had gone off up to three times a day. They were all false alarms, the expert said, due to everything from bad batteries to smoke, fumes, and noise--an explanation that, one senator noted, at the very least meant the equipment was worthless on the battlefield.
As the committee dug further, more documents trickled out. One set of Marine Corps logs noted that intelligence "confirms the use of anthrax at King Khalid Military City. Method of delivery unknown." Elsewhere, a soldier had been treated for blisters he got while exploring an Iraqi bunker; tests found positive readings for phosgene and mustard gases. And in a particularly intriguing incident, British and American units ran a series of positive tests for mustard gas on a leaking container they'd found in Kuwait. Printouts and samples were turned over to "personnel in desert camouflage with no distinguishing patches." Those were U.N. personnel, the Pentagon responded, and a later analysis of the samples showed only nitric acid--not a warfare gas. But the American captain involved in the original incident received a medal for supervising "the positive identification of a suspected chemical agent."
There is, admittedly, something hard to swallow about the notion that Gulf vets are sick from a large-scale bombardment with Iraqi mystery weapons. For one thing, most of them didn't get really ill until after they left the Gulf, which would seem to defeat the purpose of a chemical attack. If you want, you can attribute the delayed onset to Saddam's perfidy: "What if," one VA doctor speculated to USA Today, "they had developed something so insidious it wouldn't get you until you got home?" Or you can look to other possibilities--like low-level chemical exposures from the plants U.S. and allied forces bombed in Iraq.
According to the Riegle report, something like 12 biological, 18 chemical, and four nuclear "facilities" (whether civilian or military isn't clear) in Iraq were blown up during the war. Pentagon experts say that those bombings were too far from allied encampments to cause any danger, and that the prevailing winds went the other direction anyway. But they acknowledged that at least on some occasions, the wind was different and the troops closer than they'd calculated, and that their alarms wouldn't have detected low but toxic doses of most substances. The committee concluded that "there is substantial evidence supporting claims that U.S. servicemen and women were exposed to low-level chemical warfare agents and possibly biological agents and toxins from a variety of sources. This exposure may account for many of the Gulf War Illness symptoms."
Some doctors inside the military and the VA seem to agree. In 1993, Senator Richard Shelby, D-Ala., got hold of a memo written by Charles Jackson, a VA doctor in Huntsville who had diagnosed a Navy reservist as suffering from "Persian Gulf Syndrome and chemical-biological warfare exposure." Other vets treated by the doctor said he'd told them he was looking for a man-made virus. In another document, the commander of the Walter Reed Army Medical Center in Bethesda, Maryland, contended that "it cannot be ruled out that [chemical and biological agents] could have contributed to the illness in susceptible individuals." And even the Pentagon's own statements tend to be meticulously worded: "DoD has not said no exposures occurred," a spokesman told the Riegle committee. "What we have said is that there is no information, classified or unclassified, that indicates any use of chemical or biological weapons in the Gulf."
When Vietnam vets first started complaining about odd health problems and birth defects in their kids that they thought were caused by the defoliant Agent Orange, they were essentially laughed off; it took a decade for the VA to offer free medical screenings, and 18 years for the government to acknowledge there was a problem. Some of the "nuclear vets" taken to watch A-bomb explosions in the Nevada desert beginning in the 1940s are still waiting for compensation.
In comparison, the Gulf vets are doing well. Only two years after the end of the war, both the VA and the Pentagon, under pressure from Congress, set up hotlines offering free physicals, sometimes treatment, and continuing updates for anyone who served in the Gulf. Early on, officials estimated maybe 5,000 people would sign up. In the programs' first two years, 80,000 have.
According to preliminary statistics from the Pentagon and the VA, around 15 percent of those who've signed up say they aren't sick, but just want to be monitored. The remainder have come in with an array of complaints that includes aching muscles and joints, chest pains, seizures, weight gain, weight loss, irritability, loss of hair, diarrhea, constipation, memory loss, night sweats, menstrual problems, bronchitis, and insomnia. Various forms of cancer, as well as kidney stones, liver ailments, and heart problems were also reported along with allergies and troubles in the immune system.
Interestingly, despite the Gulf War illness's rap as a mystery syndrome, most of the vets seem to get a diagnosis pretty quickly. According to preliminary data on the first 27,000 people on the VA registry, some 85 percent of those with symptoms have been labeled as suffering from a variety of known diseases. But officials acknowledge that, without an in-depth study of individual records, that doesn't mean much: For one thing, diagnoses only describe a limited number of symptoms (a vet may be diagnosed with asthma and still not know why he has skin rashes). For another, labeling a disease has little to do with identifying its cause: Candice Roark may some day have a name for what's happening to her heart, but she still doesn't know where it came from.
Of course, she's not alone in that--a point Gulf War illness skeptics have not failed to make. "Lost in the rush to find the most quotable or pathetic victim is the notion that everybody occasionally becomes sick," noted an article in The American Spectator in May. It went on to quote Edward Young, former chief of staff at the Houston Medical Center: "We're talking about people who have multiple complaints. And if you go out on the street in any city in this country, you'll find people who have exactly the same things, and they've never been to the Gulf."
Young had a point. To date, there is no large-scale, epidemiologic study to show that Desert Storm vets are sick at a greater rate, or with something different, than civilians or soldiers who didn't go to the Gulf. Nor is there any sure way to dismiss the psychosomatic theory: Medical history is full of episodes where people developed mystery symptoms after false, but widely circulated, reports of poisonings or gas attacks. And Pentagon officials have pointed out that "mental disorders" constitute the third-largest category on the VA's list of diagnoses given to Gulf War vets; 13.5 percent were found to have psychiatric problems such as anxiety, depression, or tension headaches.
This is a chicken-and-egg situation. It's known that returning soldiers often come down with diseases principally caused by battlefield stress; "effort disease," it was called after World War I, and post-traumatic stress after Vietnam. By the same token, most anyone would get anxious, depressed, or cranky after a long bout with unexplained symptoms and unsympathetic doctors.
Meanwhile, there are plenty of other theories on what ails the vets. One doctor in Louisiana claims to have successfully treated Gulf soldiers with high doses of antibiotics, though he doesn't know what they're killing. Some experts continue to suspect leishmaniasis, for which no reliable tests exist so far. And a growing number are experimenting with diagnoses that have also gained currency in the civilian population, such as chronic fatigue and multiple chemical sensitivities (MCS, also known as environmental illness). A doctor at the VA Medical Center in Northampton, Massachusetts, diagnosed 25 vets as suffering from MCS in 1993, and asked the VA to fund a special chemical-free unit in her hospital. Other vets have been told they have chronic fatigue, a complex of symptoms ridiculed 10 years ago as "yuppie flu" but now recognized by the National Institutes of Health and most insurers.
Both MCS and chronic fatigue belong to a complex of barely understood diseases whose symptoms are of the kind doctors can't very well pinpoint or test. Exhaustion, headaches, and nonspecific pains are common complaints; so are troubles with breathing and thinking clearly. According to one ongoing study by the Centers for Disease Control, fatigue led the list of Gulf vets' symptoms (54 percent had it, compared to 19 percent of a "control group" of soldiers who did not go to the war), followed by difficulty remembering or concentrating (46 percent compared to 9 percent), shortness of breath, skin rashes, joint and muscle pains, and headaches.
One theory holds that these symptoms may not point to any disease in the traditional sense at all--that what's going on here is not the malfunctioning of a particular organ, but a sort of low-key systemic breakdown, caused by an accumulation of things that aren't particularly lethal, but not good for you either. On that score, Gulf vets fit the bill: In the words of a National Institutes of Health panel convened last year, the "complex biological, chemical, physical, and psychological environment of the... theatre of operations appears to have produced complex health effects in the primary military personnel." Or, as Veterans Affairs Secretary Jesse Brown put it, "it was a very dirty war, environmentally speaking"--one in which, as it turns out, enemy attacks may have been the least of the troops' worries.
To start with, the NIH panel noted, soldiers were stationed in an area of temperature extremes and desert winds, blowing sand particles so tiny they could lodge deep inside a person's lungs. They worked long hours, often breathing in fumes from fuels, cleaning agents, and fires. Tents were heated by diesel and kerosene stoves; trash, from plastic bags to batteries, was thrown onto piles and burned nearby.
Soldiers got shots and pills--vaccines to inoculate them against they didn't know what, tablets against chemical-warfare damage. Some popped them like aspirins, especially when the alarms went off. Some of the drugs, though used experimentally before, weren't approved by the FDA for general use. After the war, scientists found that in combination with certain pesticides--like those sprayed on soldiers' uniforms, tents, and blankets--the anti-nerve gas pills could produce chronic fatigue and other problems "similar to the symptoms of some veterans."
Then there were the oil wells that burned, some 600 in all; one vet told Congress the haze got so thick he could barely see his hand in front of his face. Pentagon studies provided little reassurance by pointing out that the smoke was no worse than the exhaust from "a badly-functioning automobile." There were the weapons themselves, like depleted uranium, a form of nuclear waste used to make shells and coat tanks. The Pentagon has been studying 35 soldiers who it says got attacked by "friendly fire"; 22 of them had depleted uranium shards in their bodies. Many more may have been exposed while handling or repairing equipment and munitions.
What's more, despite the bravado they presented on TV, soldiers were predictably terrified a good part of the time. The Riegle committee's report contains excerpts from a "Dear Mom" letter written at Camp 13: "I can deal with getting shot at," it begins, "because I can fight back and even if I got hit, I can be put back together. A missile, on the other hand, doesn't work like that, but I can even accept that. But gas scares the hell out of me. I know how to put on the protective suits and gear, but it's the thought..."
And finally, things didn't necessarily get easier when the troops came home. The country was in the depths of a recession; according to the American Legion, many National Guard and reserve troops found their jobs going or gone, while active-duty personnel were let go in Pentagon cutbacks. Those who got sick lost their jobs even faster, and got even sicker after that.
Almost five years after Operation Desert Shield began, it's anyone's guess what the ultimate collateral damage may be. A few vets have died, with their families blaming the war and doctors scratching their heads; many more have only minor problems. Most of the fuss has been in the U.S., though British, Canadian, and Australian soldiers have also complained of symptoms; there is very little health data from Iraq, Saudi Arabia, and Kuwait. And while there are some 22,000 U.S. troops stationed in the Gulf now--President Clinton just upped the deployment earlier this year amid noises that the shooting could start again--the Pentagon says it's received no reports of uncommon illness from them.
Politicians, for their part, are trying hard not to appear unresponsive; vets aren't a group you want to be seen brushing off. There have been at least half a dozen Congressional hearings. An uncounted number of advisory bodies continues to operate, and various government agencies have commissioned at least 30 separate studies. And just before last November's elections, Congress passed a bill to have the VA do what it's never done before--extend disability benefits to vets who can't be diagnosed. A vet who reports symptoms such as heart trouble, abnormal weight loss, fatigue, headaches, joint pains, or menstrual disorders within two years after Desert Shield/Desert Storm service, and who is certified by a VA doctor to be at least 10 percent disabled, will get benefits ranging from $89 to $1,823 a month.
Not that this necessarily works out quite as well on the bottom as it sounds at the top. For one thing, the VA is currently lurching toward the 1-million mark in backlogged cases; the average processing time is close to seven months. And even when (or if, considering that the VA generally rejects the vast majority of claims filed) the vets see their checks, the average $350-a-month benefit won't do much to support someone whose illness is not completely disabling, but bad enough to keep them out of a job.
Candice Roark doesn't have that problem--at least not yet. Her disability was certified long before the compensation law; it took about nine months and a letter from her senator. The VA considers her condition service-related because she went into the Air Force healthy and came out sick. But they still can't explain what's wrong with her.
Early last week, I called Roark to ask some follow-up questions for this article. She left an apologetic message saying she hadn't been feeling well. When I reached her a few days later, she explained that a few days earlier she'd gotten "this really strange feeling. It was just horrible. Kind of like my heart was collapsing. I thought it was a fluke and ignored it." Eventually the attacks started coming every 15 minutes, and Roark went to the VA, where the doctors put her on a portable monitor she activates every time she has an attack. She's been activating it a lot. "It's kind of scary," she allowed, briefly lapsing from the cheerful persona. "Of course it's good in a way, because I wake up in the morning and I think, thank God, I'm still alive. I sure appreciate the days more."
I asked a few more questions; suddenly, her voice turned thin and desperate. "Can I call you back?" When I checked later, her husband answered. She was feeling bad, but there was no need to call 911.
"When you start going to hospitals so much, they begin to doubt you," she'd said during an earlier interview. "So right now when I get [attacks], I do my best to deal with them on a mental level. My husband will lie next to me. There's times he's called in sick to be there. I just lie there and think, one of these times will be it. I don't know how often I can cross that threshold and come back." She shrugged. "I guess everyone expects, when you go into the military, to die for your country. I just don't think people expect it to be such a long, slow process."