The Long Road Home

For some veterans, peace, in mind and body, remains elusive long after the war is over.

The wars in Iraq and Afghanistan are the longest in American history, deploying millions of service members, often multiple times. More of them saw combat than did veterans of previous wars. And thanks to better battlefield trauma care, more of those soldiers and sailors have come home, albeit with rates of disability never seen before.

This all coincides with a 24-hour news cycle that launched with the Gulf War in 1991 and, since the early days of the war on terror, the omnipresent social media sphere. The constant attention has shined a long-overdue light on the struggles of many soldiers and their families during their frequent and long deployments, and on the injuries they suffered overseas.

Post-traumatic stress disorder had yet to be described when shell-shocked Vietnam vets came home; now a variety of treatments, trained clinicians, and a sympathetic public await returning troops. High-tech prosthetic limbs that seem straight out of science fiction feature in heartwarming evening news spots about their life-changing potential. Even issues like military garbage disposal are in the national dialogue as advocates raise awareness of open burn pits, which for years wafted toxic smoke over nearby bases.

Wounded warriors have more options for care than ever before, thanks to the continual innovation and dedication of clinicians and researchers at the Veterans Health Administration. Most vets are happy with the care they receive there. And it’s important to remember the majority of them are not disabled or sick. “There are millions of veterans that are really doing great,” says Linda J. Bilmes, DPhil, MBA, a Harvard public policy expert who studies veterans’ issues. “The majority of veterans are not suffering from PTSD. However, we need to care for those who are.”

But what some vets do struggle with, injured or not, is making meaning of their service when they get out, and that’s an area where the VA, as a health care provider, is less equipped to assist. So that gap is being filled at a grassroots level. Veterans, seeking purpose and meaning in their new lives as civilians, continue to serve—their communities and families, their former war buddies, and even future patients, as physicians or as participants in medical studies.

“Veterans really want to pay it forward here,” says Noah Philip RES’09 F’11 F’12, MD, a psychiatrist and researcher at the Providence VA Medical Center. “The idea that their participation can facilitate changes in how we do things, help the next guy or gal, really goes a long way.”

FRONT-ROW SEAT TO SUFFERING

Mike Damon, 52, is a big guy with a gruff voice. He has a salt-and-pepper goatee and kind, smiling eyes. He sports tattoos up both arms and drives a Harley, and he calls his service dog, a chocolate Lab named Siska, “my baby.”

Damon didn’t begin PTSD treatment until 2012, but he’d been carrying it for more than 20 years, since he was stationed with the Marines in the Philippines when Mount Pinatubo erupted. Tens of thousands of people had to be evacuated. Damon joined a rescue mission, and got separated from his buddies. “I had to do things that I thought weren’t right. People had done things that I thought were unethical,” he says. “In total chaos, people react in really strange ways.”

A few years later Damon left the Marines. After a period of homelessness and a car accident, he joined the Massachusetts National Guard. In 2005 and 2009, he deployed to Iraq. The two tours exacerbated the PTSD he didn’t even know he had. By the time he got back, “I couldn’t function,” he says. “I couldn’t go on duty anymore.” After giving more than half his life to the service, Damon was going to be medically retired. His marriage was falling apart. “I was on a path of self-destruction. I wanted to go back to Afghanistan to kill myself,” he says.

The suicides of two friends woke him up. Damon turned to the VA for help, where he tried every PTSD treatment available, from cognitive behavioral therapy and eye movement desensitization and reprocessing (EMDR) to hypnosis and mindfulness meditation. He’s taken medications for years. But nothing helped his
insomnia or weekly anxiety attacks.

Between 11 percent and 20 percent of Iraq and Afghanistan veterans have PTSD in a given year, according to the VA, and many, like Damon, struggle for years to find a treatment that works. Tracie Shea, PhD, a professor of psychiatry and human behavior at Brown, says although PTSD was established as a diagnosis in 1980, few specific therapies were widely available in the VA by the mid-2000s, when the first post-9/11 vets started coming home.

“It took the VA awhile, but once they started on it, they really invested a lot of resources into … funding the research, and then also providing training,” says Shea, who was a staff psychologist in the Providence VA’s PTSD Clinic from 1990 until her retirement last year.

The two treatments that got the most attention were cognitive processing therapy and prolonged exposure (PE). Both were originally developed for rape victims to desensitize them to their trauma. They’re powerful therapies—when they work. PE, which requires revisiting a traumatic event, in sometimes excruciating detail, has particularly high dropout rates. Shea’s patients were combat veterans, often with multiple traumas. After treatment, she says, about half had decreased PTSD symptoms, but few met the criteria for full remission.

Her colleague Christy Capone, PhD, a clinical psychologist, sees patients with both PTSD and substance use disorder (SUD)—a difficult combination. “We don’t have great treatments for these folks,” Capone says. While she’s had some gratifying success stories in her dozen years at the VA, “honestly, I can count those on one hand,” she says. “As a therapist, that’s really demoralizing.”

That front-row seat to suffering and failure spurred Shea, Capone, and Philip into research. They are investigators in the VA’s Center for Neurorestoration and Neurotechnology (CfNN), where clinicians and researchers are studying and developing new treatments and devices to restore nervous system function. Philip says the work feels like a “moral obligation.”

“I take the ‘do no harm’ part of what we do really seriously,” Philip, an associate professor of psychiatry and human behavior, says. Too often veterans don’t respond to the first-line PTSD treatments—antidepressants and psychotherapy—or suffer side effects or distress. “I think it’s reasonable to say that [current treatments]don’t meet our needs,” he says. “They don’t adequately meet the needs of our patients. And the only way to come up with new treatments is with research.”

Shea, as the former director of PTSD research, found some success adapting cognitive behavioral techniques to treat trauma-related anger in veterans. She and her research team developed a psychotherapy called present-centered therapy (PCT) that, rather than focusing on trauma, helps patients work through current issues. VA and Department of Defense treatment guidelines endorsed it as a second-line treatment, after trauma-focused therapies. “A lot of patients really like it. The dropout rate is  significantly lower than the trauma-focused treatment,” Shea says. After PCT, she adds, some patients may feel ready to try a more intense treatment.

Before retiring, Shea co-led “guilt groups” with Capone, using a therapy called trauma-informed guilt reduction (TrIGR). The treatment, which is also offered individually, discusses aspects like hindsight bias—when someone is convinced they could have done something differently to change the outcome—and justification analysis, which maps out patients’ actual options at the time. “Our goal is never to talk people out of their guilt … because that wouldn’t be genuine and it wouldn’t work,” says Capone, an assistant professor of psychiatry and human behavior (research).

While one-on-one TrIGR therapy allows Capone to delve deeply into one patient’s story, as a civilian she says she’ll never “get” veterans the way they do each other. “It is a very powerful experience to have other combat veterans be able to listen to each other’s events and to give feedback to each other,” she says. “It’s a heavy group. There’s nothing lighthearted about it, because people are usually bringing up something [like]killing civilians. … There’s been really great healing moments.” Capone hopes to get a grant to compare the individual and group approaches.

As a PTSD-SUD specialist, she sees patients who use drugs or alcohol to sleep, to numb their feelings or memories. Capone tries to normalize it, because telling someone with PTSD that their problem is substance use not only doesn’t work, it’s dangerous. She says when she joined the VA, veterans were often told they had to be sober at least six months before they’d be treated for trauma. “That’s not tenable for a lot of folks,” she says. “A couple of veterans had committed suicide, and had never been given the opportunity to have treatment for PTSD.” The VA responded by appointing a PTSD-SUD specialist in every medical center.

Despite improvements in care, many existing treatments fail PTSD patients. “We need more tools in our toolkit,” Capone says. She’s leading a study that combines exposure therapy with stellate ganglion block (SGB), a local anesthetic injected near a bundle of nerves to interrupt the fight-or-flight response that’s telling a person with PTSD that everyday situations are dangerous.

“The constant threat and the need to be on guard all the time, that changes people’s brains,” Capone says. “There’s an overgrowth of nerve cells that happens as a result of continued stress.” SGB “quiets it down, and kind of resets it.”

As the mental health research lead at the CfNN, Philip provides oversight to Capone’s study. “We have people who don’t take pills. And we have people who don’t want to talk about their trauma,” he says. With both cutting-edge technologies and time-honored therapies available to patients, the center is “really well positioned to meet them where they’re at.”

CHANGE THE WHOLE BRAIN

Philip admits he gets “a little queasy” around needles, so his own research trends toward the noninvasive kind: neuroimaging, neurostimulation, ultrasound, and virtual reality.

That’s how, last summer, Damon found himself behind the wheel of a simulated Humvee in the desert. It looked like a really good video game. “The buildings and the landscape were pretty spot on,” he recalls a few months later.

The simulation was created for a VR study that Philip’s team is leading of post-9/11 vets with entrenched PTSD, like Damon. So there the retired sergeant was, wearing VR goggles and wired into a moveable platform with electrodes on his head and hands. “It’s so good you can feel the engine idling,” Damon says. He could hear it, too, and what most surprised him, “they have a Smell-O-Vision thing that blows scent your way.”

More than 10 years had passed, yet with one sniff Damon was transported back to his combat tours. “Iraq has a unique smell,” he says, “like a garbage, rotting, burning plastic, charred smell.” It wasn’t exactly the same, but “they tried.”

Philip says collaborators at Emory University developed the VR scenario with input from Southwest Asia veterans, to get the sights, sounds, smells, and feel of driving there as close to the real thing as they dared. “We’re trying to make it real enough that it reminds people of the context, but not so real that it is triggering or upsetting,” he says. “We don’t show blood and guts. … Our purpose is just to get the brain in a state where it can learn.”

In each session, study participants are rocked by an improvised explosive device. There’s shouting and gunfire. Meanwhile the electrodes on their hands measure skin conductance reactivity—how sweaty their palms get—as the ones to their heads deliver transcranial direct current stimulation (tDCS) to the medial prefrontal cortex (or a sham stimulation, for the placebo). Whether real or fake, “it feels like a mosquito,” Philip says.

But this non-invasive therapy, which emits about the same electrical current as a 9-volt battery, has gained acceptance as a powerful tool to treat depression, PTSD, and other conditions, by “helping neurons to fire when they otherwise wouldn’t, and in patterns that they’re not,” Philip says. The brain of someone with PTSD tends to seek out threats; neurostimulation interrupts that process—that conditioning—and, over time, alters how the brain functions. “We’re trying to get the whole brain to change,” he says.

In Iraq, Damon was shot at and bombed. When he got home that hypervigilance was still with him. “The adrenaline is always pumping just a little bit, to keep you aware,” he says. After his second VR session, “that all went away.” His anxiety attacks faded to less than once a month. And he could sleep. “I’m really mellow now,” he says. Even his adult kids saw it: “They say, ‘I like you better now.’”

The double-blind study is still underway, and Philip doesn’t know if Damon received tDCS or a placebo. But everything the veteran described happened “exactly” as Philip hypothesized it would: an exponential change early in the six sessions, then leveling off until, Damon says, “I was just going through the motions.”

“Whenever we’re learning something new … it’s really hard at the beginning, and then it gets easier and easier,” Philip says. “Sooner or later, when you get good enough, you don’t even have to think about it.” You might even find it boring.

Almost all of Philip’s research, like the VR study, includes neuroimaging to see changes in the brain, so investigators know what works and what doesn’t. A new trial he’s leading will use MRI for a more exacting procedure: to guide low-intensity focused ultrasound deep into the brain in a first-in-human study of people with depression and anxiety. The small pilot will demonstrate whether sound waves can turn off the amygdala’s fight-or-flight response and ascertain the technique’s safety.

Even if it only shows the latter, it could “open the field up,” Philip says. Ultrasound is “an inexpensive and portable technology and it’s potentially transformative … in terms of access to care.”

THE LOWS OF HIGH TECH

Scientists and clinicians in the CfNN are working not only to restore veterans’ brains, but their whole bodies. Linda Resnik, PT, PhD, leads research on limb and sensory function. After 18 years as a physical therapist, she went back to school to get her doctorate “to build the research evidence base for rehabilitation,” she says. She did her postdoc at Brown and joined the VA to focus on helping veterans readjust to civilian life, physically and mentally.

“That really resonated with me as a physical therapist,” she says. “Our goal for patients is always to participate in society and to return to their roles in whatever way they most want to. And if they’re injured, perhaps in a new way that lets them fully function.”

At the VA, Resnik, now a professor of health services, policy, and practice in the Brown School of Public Health, led efforts to test and improve an advanced new prosthesis known as the DEKA arm. As she learned what patients liked and didn’t like about new technologies, she realized “we really didn’t know enough about currently available prosthetics and how people felt about them,” she says.

Three types of upper-limb prosthetics are most common: cosmetic devices, which don’t do much other than look realistic; body-powered prostheses, which have a shoulder harness and hook or hand-like device that can grip; and myoelectric limbs, which are operated by muscle signals and electronic motors—making them by far the most advanced, but also most likely to break.

Resnik led a national study of veterans who use one of these arms. “Having training when you first receive a prosthesis really makes a difference in ultimate prosthesis satisfaction,” she says. She didn’t find much difference in satisfaction by type of device, though she did note that older veterans were more likely to be happy with theirs, while Black veterans were less so.

“Some of these things look so spectacular that I think people’s expectations are quite high for what they can achieve,” Resnik says of high-tech devices. “And as much as they may seem like improvements, functionally, they don’t really replicate your missing hand, and that can be disappointing.” Many veterans, whose amputation care is covered by the VA, have more than one prosthesis to use for different purposes. A myoelectric arm can’t get wet, so someone might use their body-powered arm to go fishing, Resnik says. “Right now, we don’t have a device that can do it all,” she says.

One major limitation of her satisfaction study was it only included people who were using their prostheses—and as many as 40 percent of veterans abandon them. Resnik wants to get to the bottom of why that is. In another study that included both people who used prostheses and those who didn’t, she found, “People who use any active prosthesis have better function and quality of life and are more independent.” That’s why, for the VA, “really understanding how to make devices that are more satisfying and acceptable is a high priority.”

Women veterans are most dissatisfied with their prosthetic arms, and more likely to stop using them altogether. Resnik is analyzing data from a large study to capture their concerns, but she knows some of the problems already: prostheses aren’t the right size or proportion for female bodies; few amputation  specialists are sensitive to working with women; and existing devices don’t meet women’s needs.

“A prosthesis is hard. It doesn’t feel. Men and women might be concerned about hurting others with it,” Resnik says. “If you think about how you want to interact your prosthesis with other people or children, it may feel more comfortable not to use a device and use your residual limb.”

Restoring touch, once a holy grail of amputation research, is edging closer to reality. “The loss of sensation is a huge factor in being able to manipulate objects and have confidence in what we’re doing,” Resnik says. A team at the Cleveland VA is connecting nerves in volunteers’ amputated limbs to sensors in their prosthetic hands, which then send tactile signals to the brain. “It’s pretty astounding,” Resnik says. “I’m particularly interested in the psychosocial impacts of that.”

While veterans are the direct beneficiaries of VA research, advancements in prosthetics ultimately trickle down to the thousands of civilians around the world who lose limbs to natural disasters and accidents and disease. Resnik says her study participants sign up because they still feel that call to serve the greater good. “In most of my research, they’re not getting a device at the end of it,” she says. “What motivates them is the hope that their efforts are going to help someone else.”

WORSE THAN A DUMPSTER FIRE

War on terror veterans who lost limbs, suffered concussions, and struggled with PTSD were the most visibly affected by their service, and got the most medical (and media) attention when they came home. But other specialists were quietly noting an uptick in a very different category of disease.

“We saw this real rush of people being referred to the pulmonary clinic for respiratory complaints,” VA pulmonologist Sharon Rounds, MD, recalls. In the mid-2000s, she and her colleagues started recording asthma, sinus problems, and other upper airway complaints that patients said they’d developed in Southwest Asia. Unlike older vets, most of them were nonsmokers, Rounds says, “so it seems that the onset of the symptoms did coincide with the deployment.”

Rounds learned from her patients that, in isolated areas, the US military disposed of all their waste in deep, football field-sized pits. “Soldiers have told me they would light them with jet fuel,” she says. They burned everything: ammunition, plastic, food, human waste—“you name it.” That acrid smell that so vividly reminds Damon of Iraq emanated from, among other things, the burning of garbage right next to his base.

Limited air sampling at a few locations detected potentially hazardous materials like dioxin, formaldehyde, acrolein, and small particulate matter, Rounds says. Yet the pits kept burning, sending plumes of black smoke into the air. As one person described it, “You feel like you’re on the lip of hell.” President Biden has blamed burn pit exposure for the glioblastoma that killed his son Beau, who served in Iraq.

For years, the VA denied any connection between burn pits—which the DOD says it began phasing out in 2010, when it brought incinerators to remote bases—and illness. But as veterans and advocates became more vocal, politicians took notice. In 2014, Congress ordered the VA to create the Airborne Hazards and Open Burn Pit Registry, which tracks the potential health effects of exposure and has enrolled more than 200,000 people so far.

After years of rejecting claims, last August the VA began compensating any veteran with asthma, rhinitis, or sinusitis who had served in the region, “based on presumed exposure to particulate matter.” Then on Veterans Day, the Biden administration—acknowledging the decades that Vietnam vets exposed to Agent Orange waited for compensation for their illnesses—announced the VA will speed up review of claims for constrictive bronchiolitis, lung cancers, and rare respiratory cancers, again based on presumed exposures.

“The people affected … deserve everything they can get, because they’re wonderful people,” says Rounds, who’s also the associate dean for clinical affairs at Brown. The more serious conditions usually take years to present; many more veterans may develop them in the years to come. Even then, it might be difficult to link their service to their disease. “It’s very, very hard to prove these associations,” Rounds says.

Rounds is an investigator on a VA and DOD study, one of several trying to nail down a connection between burn pit exposure and health impacts. Led by David Savitz, PhD, an environmental epidemiologist at Brown, the researchers are gathering and analyzing massive amounts of data to address this question: deployment records from the DOD; where and when burn pits were used; health care data from the VA.

“Certainly there’s no question they were burning toxic materials, that there was air pollution produced which has harmful effects,” says Savitz, who’s a professor of epidemiology, of pediatrics, and of obstetrics and gynecology. “There’s no question about that. The question is whether there is a discernible effect on the risk of disease.” Burn pits, he adds, “are a very peculiar and particular kind of exposure.” They are somewhat analogous to community air pollution—say, living next to a highway or a power plant—but most people live on a base for only a few months, maybe a year. Can someone inhale enough pollutants to get sick in such a short time?

Another imperfect analogy—the World Trade Center collapse—may suggest an answer. “Basically everything in those buildings was part of a mix of lots of different chemicals,” Savitz says. “This is a different source, of course. But it’s the same idea, of the clouds of dust that contain ill-defined chemicals, hundreds of different chemicals.” Firefighters, construction workers, and cleanup crews toiled for days, weeks, and months after 9/11 breathing the dust that coated lower Manhattan; countless more inhaled it as they returned to their apartments, schools, and offices. Thousands have since fallen ill and hundreds have died from diseases linked to their exposure.

Given the shortcomings inherent in the burn pit exposure data, Savitz says, it’s unlikely we’ll ever know for sure which health problems they cause. “As a scientist and researcher, I may find the current evidence quite limited, which it is, and believe there is value in more rigorous, informative research but accept that decisions will be made based on presumptions without direct empirical evidence supporting those presumptions,” he writes in an email. “That may well be exactly the right thing to do based not on science but on fairness and ethics.”

Rounds sees hope for future service members, thanks again to the selfless service of today’s veterans. The VA’s Million Veteran Program, launched in 2011, has genotyped 850,000 people so far, to find connections between genes, lifestyles, military exposures, health, and illness. “If they can figure out a genetic profile associated with these post-deployment syndromes, then they might be able to manage the deployment,” Rounds says. “In other words, tell a soldier, no, you go to Thailand instead of Iraq. Or you don’t leave the United States. You sit at a desk somewhere.”

‘WHAT WAS THAT ALL FOR?’

Shortly after the US began the chaotic withdrawal of troops from Afghanistan, last August, the VA sent an email to patients, caregivers, and staff. “Veterans may question the meaning of their service or whether it was worth the sacrifices they made,” the message read. It listed resources offering counseling and crisis intervention; normalized common reactions like anger, grief, and substance use; and suggested strategies to manage distress. The email assured recipients in big, bold letters: “You are not alone.”

According to Brown’s Costs of War Project (see sidebar), four times as many post-9/11 veterans and service members have died from suicide than in combat. “It’s very common for me to hear people saying, ‘what was that all for?’” Christy Capone says. They may have enlisted out of patriotism, but really, they tell her, “‘I was there for the guy to the left of me, the guy to the right. And then we lost so many of them.’ … That’s a really hard conversation when people feel like this was all meaningless.”

Alec Kinczewski MD’21 ScM’21 was a self-described “screwball high schooler” until 9/11. As he watched the carnage on the TV in his Evanston, IL, classroom, the 17-year-old felt a calling: to join the military and go to Afghanistan. Instead, the signal officer wound up in Iraq—a mission he thought “was bullshit from the start.” He echoes Capone almost verbatim: “When it comes down to it, you’re there to try and help to care for the people to your left and right and make sure everybody gets home,” he says. “That was really the higher purpose, making sure we all got back safely.”

No matter what drives that sense of duty, it’s lost the moment someone leaves the military. After eight years in the Army, Kinczewski had no idea how to be a civilian. “Going from Captain Kinczewski to Alec, you cannot be prepared for that,” he says. “The transition is very difficult.”

With a supportive family and little combat exposure, Kinczewski says he had a pretty soft landing compared to many vets. While applying to medical school he worked for a homeless services provider, which steered him toward psychiatry as his specialty. Then in his third year at Brown, two veteran buddies took their lives. Kinczewski sought out psychiatry programs with VA hospital affiliates, and matched to the University of Washington.

“These people get it,” he says of his residency program. At a suicide prevention training, he was told, “Keep an eye on people who are in times of flux and crisis, and one of them is transitioning out of the military.” That inflection point is where Kinczewski hopes to focus his career. He wants to help individual veterans navigate the logistics of civilian life—finding work, housing, health care—as well as cope with the challenges inherent in such a major life change, even for those who don’t have PTSD, substance use, or other mental health issues.

As a graduate of Brown’s Primary Care-Population Medicine Program, Kinczewski is also thinking bigger picture. “Where did we make our mistakes with people transitioning from the global wars on terror?” he asks. The VA has reported that more post-9/11 veterans struggle with the readjustment period than have previous generations; a 2016 study in Lancet Psychiatry found significantly higher rates of suicide in that first year of civilian life, and it remains elevated for several more years. “There’s going to be another war at some point,” Kinczewski says. “How are we to make sure we don’t have this mess happen again? That’s my job now.”

The answer will likely lie in a coalition of government and nongovernmental services, working together toward the same goal. While the VA can ably provide medical care and benefits, “it is not set up to be responsible for enabling people to rehabilitate into productive and meaningful lives,” Linda Bilmes says. Mike Damon says he felt “totally lost” when he left the military. “When you’ve been part of a great organization, and the people there are willing to sacrifice their life for yours, that’s a bond you can’t break,” he says. “Once you’ve lost that, it can be hugely devastating.”

In 2017, a friend invited Damon on a cross-country motorcycle trip to meet veterans struggling with PTSD and other problems, but who weren’t getting treatment at the VA or outreach from anyone else. “I just had an epiphany,” he says. “You have to find them out, and we have to go to them.” As his friend continued to travel the country, seeking out vets who needed help, Damon founded a mentorship program, Vet Unite (vetunite.org). Many of the people referred to him are new veterans.

“One of the crazy things about PTSD is your mind tells you that no one gives a shit,” Damon says. “It’s amazing when you have an isolated veteran and you ride your motorcycle 6,000 miles, 600 miles, or even 50 miles. It makes a statement … when their mind’s telling them they’re worthless.”

In 2020, Damon created the Transition Guide for Veterans, a six-step program to walk new vets through the “culture shock” of adjusting to civilian life. He says he’s worked with about 200 people so far, either one-on-one or in small groups. The final steps of his program—serving others and developing a new purpose—reflect the path he took as he turned his life around.

“I had walked through the valley many, many times,” he says. He survived war, motor vehicle accidents, homelessness, a volcanic eruption, and finally, barely, PTSD. Yet even as everything crumbled around him, Damon says, “I knew that there was a reason for it, and that I just had to be patient and figure it out.”