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Beyond the Battlefield: As Wounded Veterans Struggle To Recover, Caregivers Share The Pain

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"Beyond The Battlefield" is a 10-part series exploring the challenges that severely wounded veterans of Iraq and Afghanistan face after they return home, as well as what those struggles mean for those close to them. Other stories in the series can be found here, and listen to reporter David Wood discuss "Beyond The Battlefield" with NPR's Terry Gross here.

Army Staff Sgt. Bryan Gansner was lucky: The IED that exploded beneath his vehicle in Iraq one hot night in July 2006 didn't kill him. It did, however, shatter his heels and ankles and shred his legs, and the concussion bruised his brain, dimming his cognitive and emotional abilities. Jagged shrapnel also peppered his body, leaving him bleeding heavily. Forty of his fellow 101st Airborne troopers lined up to donate blood, and medics and surgeons patched the holes and saved his leg. Medevac planes sped him homeward for advanced surgery.

But as his wife Cheryl, then 24, raced from Kentucky to meet her wounded husband at the former Walter Reed Army Medical Center in Washington D.C., neither she nor he knew that as painful and terrifying as the past few hours had been, the very worst lay ahead.

At first, "he was like an infant, he was so sweet and so doped up," Cheryl recalls. "We didn't have any idea of what was going to happen."

How could they?

When Bryan left with the 101st Airborne for Iraq, Cheryl had tried to prepare herself for the possibility that he would be killed in combat. "I never thought too much about him being wounded," she says. "I was stuck on the part of, if something happened, he'd be dead."

No one, a decade ago, anticipated that the wars in Iraq and Afghanistan would produce more than 50,000 battle casualties, among them some 16,000 young Americans so badly injured -- "ripped out of the hands of death" by advanced trauma care, as a Navy surgeon put it -- that many of them would require lifetime care.

Yet despite all the training and preparation lavished on combat-bound military personnel, there is no training for managing the realities of being severely wounded. Not for the combat troops. Not for their families.



Like thousands of other young Americans, Bryan and Cheryl, married for less than a year, were thrust into the unanticipated roles of "severely wounded soldier" and "full-time medical caregiver."

The first hours can be a traumatic shock: Wounded soldiers often arrive in a coma and swathed in gauze and tubes. Their wives, or mothers, often face immediate decisions about how long to keep them on life support, whether to amputate a shattered leg, or whether to donate the body to medical science if the soldier dies.

Newcomers to this daunting new world often don’t understand that military medicine is terrific at addressing immediate problems -- patching holes, repairing crushed bones, healing the stump of an amputated limb, grafting skin and muscle -- but not so good on the long-term physical consequences of severe wounds. Few families reckoned that those consequences, including chronic pain, abnormal growth of jagged bone and swelling tissue, nerve damage, arthritis, headaches, infections, drug addiction and many others, would persist or even increase over a long lifetime.

Traumatic brain injury and post-traumatic stress disorder, with their accompanying frustrations and emotional storms, also aren’t widely understood by the wounded and their families. Few are prepared for the outbursts of violence, the disorientation and confusion, that persist or can unexpectedly erupt months or years after a patient leaves a hospital.

And it’s certainly not widely appreciated that the primary responsibility for taking care of these long-term problems gradually shifts from the professional staffs of the military and the Department of Veterans Affairs to families -- and specifically to wives and mothers.

For those left to care for a severely wounded or disabled soldier, the stress, over time, can become severe. Caregivers and medical professionals say that it isn’t uncommon for some to eventually feel that suicide is their only way to escape lives that have become traps.

"We've all thought it," says Cheryl, a strong, lively and capable woman with an easy laugh and an ability to minimize the hard times. "Most of the women have felt that way, that the only way out is to kill herself."

"We fought so hard, but there comes a point where it seems you can't live like that anymore, there's no where to turn … it gets so bad."

SHREDDED IDENTITIES

"One of the things everyone missed is that there's a life afterwards, a 'rest of their lives,'" says Sarah Wade. An IED in Iraq blew off her husband Ted’s right arm and left him with traumatic brain injury. After doctors at Walter Reed and at the VA Polytrauma Center in Richmond, Va., tended to his immediate wounds, "we realized that the normal medical model ended, that we didn't know what to do with the rest of our lives."

As time went on, the shape of Sarah’s new life emerged.

"It became more and more obvious I needed to step up to the plate and be a full-time caregiver for the rest of my life," she says.

For all partners of severely wounded veterans, it is a common, and obviously life-altering, realization.

Luana Schneider, an artist and mother living in Atchiston, Kan., wasn't prepared for what happened halfway around the world on a Saturday afternoon in November 2006, when her son, Scott Stephenson, drove over an IED constructed of four 155 mm artillery shells and 10 gallons of gasoline in his Humvee near Iskandaria, Iraq. Shrapnel from the blast punctured her son's body and internal organs and almost severed his left arm.

Bleeding badly, he was soaked with fuel that ignited into a fireball, severely burning him over two thirds of his body. He flatlined twice and suffered several strokes, but the military got him from the wreckage into intensive care at Brooke Army Medical Center in San Antonio by Monday evening.

He was barely alive, but he was alive, and when Schneider got to his bedside, he struggled against the tubes in his throat and mouthed the word, "Mom!" From then on, his mother started down a new path as his primary caregiver.

Having shed their own identities, women like Cheryl Gansner, Sarah Wade and Luana Schneider, find themselves redefined as caregivers. In intensive care wards and long afterwards they eat and sleep beside their injured husbands or sons, empty bed pans, change wet, soupy dressings, feed and bathe them, schedule appointments and manage medications.

They learn to soothe pain and confusion and depression. They struggle with the arcane language of trauma surgery, neuropsychiatrics and pharmacology, and with the military's often-bewildering bureaucracy. Doing everything they can, as Cheryl put it, "to find treatments, research symptoms, compare medications and figure out why things weren't right."

Though many have had to quit their own jobs, they have to continue to pay the bills at home, too. In many cases, they also have to parent and manage the children.

These full-time caregivers often say they feel like enlisted soldiers themselves -- but without the structure, the camaraderie and the institutional support that soldiers have. Many of them find counseling available for their husbands' PTSD -- but not for their own stress and the anger, fear and guilt that often plays out in nightmares.

The wounded receive Purple Heart medals and are called heroes. Too often, the caregivers stand in the shadows -- unacknowledged and unsung.

"I am not only my husband's caregiver, non-medical attendant, appointment scheduler, cook, driver, and groomer but I am also his loving wife faced with my own stresses and frustrations," Crystal Nicely, whose husband, Todd, is a Marine quadruple amputee, told the Senate Veterans Committee in July. "What is upsetting is the lack of support, compassion and benefits" for caregivers, she added. "Helping him through his treatment is what I want to do. But I need the system to help me do that."

After a long struggle, Congress, with the help of Sarah Wade and others, finally prodded the Department of Veterans Affairs to officially recognize, train and pay small stipends to family caregivers. Those certified by the VA will have access to their own mental health services, according to the VA -- and a paid vacation.

Unveiled with fanfare earlier this year, the program is off to such a slow start that Crystal Nicely, whose husband is one of only four Marines to lose both arms and both legs in combat, said that she has "gotten hardly any information on how to participate."

Luana Schneider gave up her career as an interior decorator and her "side job" as a mother of six, and moved to Brooke Army Medical Center in San Antonio to care for her son. In addition to his severe burns, he had suffered perforated internal organs and leg injuries that eventually required an amputation. She lived in a hotel room and devoted days and nights to his care. Just changing his dressings took up to eight hours a day.

Caregivers who are mothers have a special burden.

"The things I had to do for my child, at 22 to 25, are things that you don't think you're ever going to do," she says. "When you have to wipe his bottom, hold him up in the shower and wash his privates and … things people can't comprehend. It does create an intimacy between you two, but it's damaging. That's not what your adult male child wants his mother to be doing."

She and her son got through the worse of it, she says, by joking.

Because Schneider is not a military spouse or a dependent, she is not allowed to shop at the base PX, a type of retail store on Army posts, or use any other military facilities. Visiting Fort Leavenworth, Kan., recently for medical appointments, she stopped at a military store for a bottle of water for Scott, who was feeling ill. The clerk at first refused her because she didn’t have a military ID.

Schneider’s son is medically retired from the Army and, five years after he was wounded, Schneider still spends most of her days seeing to his well-being. Yet she doesn’t qualify for financial support from the VA's caregiver assistance program. "He is not wounded severely enough," she says she was told.

But that didn't stop her from pursuing his care aggressively.

"I am a bitch and that is my child, and you owe my child respect," is how she explains her approach to the Army and VA bureaucracy. "I gave him to the Army in the best physical condition of his life, and they gave him back to me in pieces. You will take care of him or I will know why and I will do something about it and I will be rude."

STEELY DETERMINATION

Other caregivers quickly learn that Schneider’s kind of steely determination is needed to get results.

During the 20 months that Bryan Gansner spent at Walter Reed, his wife Cheryl recalls "how hard it was to manage the red tape, the appointments, the medicines and the wound dressings, when I was overly tired and Bryan was in extreme pain. I will never forget how dirty the hospital was. I remember heating water from the sink in the microwave in a large puke bucket and carrying it up and down the hall so I could bathe him."

Beneath it all, of course, spouses are grateful that their husbands are alive. But especially for these young women caregivers, the grim world of the severely wounded may stretch out ahead of them for decades.

Their days and nights also become populated with the once unimaginable. Nightmares, for instance.

They started the day after Cheryl was notified of Bryan's injury. She says a sickly smell of blood soaks these vivid and unsettling dreams. She is in a military vehicle being bombed from the air or rolling over an IED. The face of the Iraqi who planted Bryan's IED looms up suddenly, and Bryan is blown apart, and there are other injured soldiers. Then she is stuck again at Walter Reed, dressing Bryan's wounds over and over.

"I feel like I am trapped in my dreams," she wrote in her blog in February 2011, almost five years after Bryan was wounded. "You know the sensation of falling and you know you need to wake up before you hit? This is how it feels to be stuck in my dreams … I think this is probably a common issue for wives of wounded warriors."

She has stayed by her husband’s side, however, finding strength from a painful and difficult period when she was 16 and her parents divorced, and Cheryl and her mother found themselves on their own. Cheryl had to grow up faster than she had planned, and she vowed then that if she ever got married, she would do her best to make it work no matter what the circumstances.

"I just didn't know that situation would come so quickly," she says with a rueful chuckle.

Five weeks after Bryan was blown up, with his legs in casts, they decided to escape the confines of Walter Reed and head out for some fast food. Just getting Bryan into their tiny rental car was a chore, since his legs couldn't be bent and he had to sit in the back seat, and Cheryl had a hard time fitting his wheelchair into the trunk.

As she drove carefully up Georgia Avenue, trying not to jar his legs, Bryan was gasping and clenching his fists, peering out at manhole covers and trash piles, looking for IEDS and terrified that a bomb might go off as it had beneath him in Iraq.

"This broke my heart -- I had no idea it would be this scary for him," Cheryl wrote that night.

After a few weeks in intensive care and 30 days of convalescent leave, Bryan and Cheryl were assigned to live at Mologne House, an Army-run hotel for outpatients on the former Walter Reed complex. This was not the vermin-infested, rotting, greasy slum that some patients were assigned outside Walter Reed, in a scandal uncovered in 2007 by the Washington Post. This was Army housing, but it was deeply depressing.

Their room had two double beds, a mini-fridge and a desk. They could eat meals at the cafeteria or sit on their beds to eat take-out. Washers and dryers were shared by 50 families and Cheryl would have to do wash at 4 a.m. The bathroom was so small she'd have to drag Bryan in sideways up to the sink to brush his teeth. This would be their home for the indefinite future.

They lay on one of the beds, in despair. They knew they'd have to sell their house in Kentucky. They would lose contact with Bryan's combat buddies and Cheryl's girlfriends at the 101st Airborne at Fort Campbell. The happy life they had known was over. Suddenly, Bryan started sobbing. He told Cheryl he didn't want to be there, that he didn't want to hurt, that he was sorry for putting her through this.

As she held him, he said he didn't want to live any longer.

"I was the most scared I had been in my life," Cheryl wrote later. "I knew he had beat the odds and survived the blast but I knew at this point he would struggle for the rest of his life. The outcome probably wouldn't be what we had expected. We knew at that point that he would always be in physical and emotional pain."

There was little they could do but to keep on, struggling.

Cheryl was raised as a Southern Baptist, but she'd let religion slide when she went away to college. After Bryan was blown up, though, she returned to prayer for help.

"I prayed every night for God to bring back a piece of my husband, to return some semblance of what he was before," she says. Bryan's brain injury, and the medications he'd been given, made him numb and flattened out his personality. "He was somebody I didn't recognize at all. He wasn't happy or joyous, which were the things that had attracted me to him. He was standoffish, hateful, angry and selfish."

"I wanted part of the old Bryan back," she recalls. "Even just a part."

It took two and a half years to get Bryan a case worker through the Army's Wounded Warrior program, which initially denied him care because he wasn't missing limbs -- even though his legs were encased in casts up to his hips. It took the intervention of Gen. Dick Cody, then the Army's vice chief of staff, its second-highest officer, to fix that, Cheryl said.

One time she left Bryan alone to run an errand, and came back to find him stranded in the bathroom: He'd had to use the toilet and had gotten in okay, but couldn't get back into his chair because it wouldn't fit between the sink and the toilet.

Their first Christmas at Walter Reed, the veterans organization Rolling Thunder put on a breakfast for the wounded and their caregivers.

"I was choking back tears that this group was volunteering their time on Christmas morning to serve us," Cheryl wrote. "It was hard to see everyone sitting around in wheelchairs … it amazes me every time I see this many wounded soldiers in one room of how young they are … A little blond haired girl of about eight came up to Bryan and said 'Hi, would you like a board game?' Bryan said sure. She said 'Here ya go,' and she said, 'I want to thank you for your service and sacrifice. Merry Christmas.' I got huge tears in my eyes. What a touching moment … we had a great Christmas after all."

Such good times seemed swamped by an onslaught of other problems. Bryan was once an avid skier. Now his legs hurt all the time; his joints were stiff and his feet ached. Eventually he won a medical discharge from the Army. Struggles with the VA ensued -- to get his medical appointments, to get his mental health therapy, his pills, his disability rating. Bryan's emotional outbursts worsened. He was having memory problems; at restaurants he couldn't remember what he liked to eat. He got a job, but it was difficult and frustrating.

"I used to be very sharp, a steak knife -- now I feel like a butter knife," Bryan says.

PAYMENTS DENIED

The Gansner's VA case manager was in Mountain Home Va., a two-hour drive away. "She had 5,000 cases, and you're supposed to see her every month?" asks Cheryl. When Cheryl would call, she'd sometimes get a message saying the case manager’s voice mail box was full. "Recently I told her not to worry about it, I know she's too busy."

Inevitably, Bryan and Cheryl’s frustrations turned on each other. Cheryl would prod him to be more active; he would accuse her of trying to run his life. He tried to wean himself off the drugs and became sick. Fights became more frequent. At one point he tried to run her over with his car. Another time he fled the house and disappeared with his guns. He returned hours later and again told Cheryl he wanted to commit suicide. At her wits' end, Cheryl told him that decision was up to him but "I wasn't going to help." He began crying, and she held him.

Today, more than five years after the IED blast that shattered their lives, Bryan and Cheryl seem to have reached a somewhat better place. Through her own research, Cheryl found a treatment for Bryan's PTSD, hyperbaric oxygen therapy, which helped immensely. But the treatments are extraordinarily expensive, almost $29,000 each.

After being assured by Tricare, the Defense Department health insurance system, that the expenses would be covered, the Gansners were recently notified that Tricare denied payment because Bryan is no longer on active duty. A nonprofit organization, Healing Heroes Network, paid part of the bill and the doctor reduced his fee. Still, the Gansner's face a bill for $6,000, which they cannot pay. He needs another treatment, but that is beyond their means.

Given that Bryan volunteered to serve his country and came home wounded, Cheryl said, it's "hard not to feel bitter, enraged, cheated, lied to and left high and dry."

The bill has gone to a collection agency. Their struggle continues.

On the bright side, Bryan is working; his pain is easing; his emotions are more stable.

"My legs hurt, but they work pretty good," he said one day as we strolled outside his house in Knoxville, Tenn. "I don't focus as well. I get distracted. It's very disheartening if I think about it. I feel I can never accomplish what I could have. I am not glad I got blown up. I had decided to get out [of the Army] at the end of the deployment." Thinking of the way things have turned out, he said, "I am … disappointed."

As for Cheryl, she is trying to emerge from the role of caregiver and embrace a new identity. "I had to let things go," she wrote. "We both needed him to start caring for himself. I needed to quit being his mother. It was hard for both of us to let go. I felt anxious and grief when I did not attend his appointments."

Today, they no longer identify themselves as a combat-wounded couple. They have stopped explaining that he was blown up in Iraq. Cheryl started volunteering. She puts in longer hours at work.

"Since we're in a good place and we kind of survived everything, the emotional and mental and physical wounds, and our marriage is still intact -- that's kind of a success story, compared to a lot of people," she said recently. "Although last week was a hard one."

Cheryl, who has a degree in sociology, is now the program coordinator for Wounded Warrior Wives, a nonprofit set up to support caregivers. Her experience has proven invaluable as she manages private Internet forums and the Facebook page, counsels other caregivers and plans retreats and other meetings.

"When I'm on the phone with a person who may be struggling, I feel I give them a sense of hope, that we made it through to the other side, that Bryan and I are doing really great, moving on with our lives," she said. "I think it's helpful for people to talk with someone who knows about the medical boards and the VA and Social Security and all the different pieces that are so confusing."

Cheryl has found it hard to leave behind the close-knit military community, which surprises her because when she first met a cute guy named Bryan Gansner in a bar, she recoiled upon hearing that he was a soldier.

"I miss it, actually, the kind of bonds and friendships that come so easily," she says. "It's really hard in the civilian world to make friends with people who have no clue about your background and that your husband was wounded -- a lot of people don't want to be a part of it."

"I never thought being a military wife would be so life-changing. I don't regret it. It has taken me on the path I'm on now. It's not been all bad," she said with a chuckle. "I can fix a toilet and a broken garage door …"

NEXT: From spray-on skin to healing bio-masks, doctors are working to perfect medical procedures that offer new hope to even the most catastrophically wounded.

Huffington Post Impact has compiled a list of organizations that seek to help veterans like the ones featured in "Beyond The Battlefield." You can read more about those groups, and ways you can help, here. Other stories in this series can be found here.

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