Amnesia erases daily life for Army veteran
By Audra D.S. Burch | Miami Herald (Tribune News Service) | Published: January 21, 2016
Steve Ligeikis, 47, has forgotten what happened to the cat.
“Alek!” The ex-military man scans each corner of the living room, looking for the familiar figure of the orange tabby to appear, purring against his legs.
His voice rises with anxiety on this rainy Sunday afternoon. “Alek!”
Steve’s wife, Emma, flinches by the front door of their two-bedroom apartment in suburban Fort Lauderdale.
The instant Steve called out for the cat — his favorite — she realized he had forgotten again, his short-term memory resetting in an uncommon form of amnesia that has plagued him for five years.
She rushes to him, sure of what comes next. Grief, fresh and raw. Emma leans in close and whispers the truth: Alek died 10 months ago of intestinal cancer.
“What happened to him?” he asks, head bowed as he sat on the edge of their bed.
“He died. He was very sick. He had cancer,” Emma says softly. “Remember when he started to lose so much weight?”
Emma cradles Steve, stroking his face.
He begins to sob. He doesn’t remember the cat’s death. He never does. He has mourned Alek, deeply, at least four times now — losing his bearings, forgetting that he has already felt this particular pain.
'Why can't I recall yesterday?'
For years, Steve and Emma and a long line of doctors have been fighting to unlock the mysteries of Steve’s brain, to find out why the Army veteran stopped recording even the most rudimentary new memories — what he had for breakfast yesterday, whether he has seen this TV show before, how old he is today.
He remembers the past before 2010 in precise detail: 14 years of military service, fulfilling a dream since he was a little boy in fatigues. A childhood with nine siblings spent partly in Miami. Deployments to Egypt, Saudi Arabia and Kosovo. He remembers it all, down to the misspelling of his last name on the Army enlistment form from high school — they used an E instead of the first I.
But he can’t tell you much about yesterday.
“I am standing in a dark room and opening a dark closet which is even darker than the room . . ,” Steve said, describing how memories elude his grasp. “I can’t pull out that information.”
Doctors say no single event robbed Steve of what is commonly thought of as short-term memory. But in hundreds of medical records the couple shared with the Miami Herald, along with extensive interviews with doctors, a theory emerges. A virus, doctors say, is the most likely culprit, delivering the final blow to a war-ravaged brain. It narrowed Steve’s world to the first 41 years of his life and the present, with a porous and unpredictable gap in between.
“His connections to today and tomorrow are severed,” said one of his Miami VA Healthcare System doctors, Nancy Klimas, director of the Institute for Neuro Immune Medicine at Nova Southeastern University.
For Steve, a smart man with green eyes behind glasses, each day is new again. He has watched the movie Vacation four times, and every time he laughs as though he’s never seen it before. He greets his doctors as pleasant strangers. He often walks into the apartment where he lived 17 months ago. His mother-in-law now lives there.
Steve and Emma are forced to live and love — quite literally — in the moment.
“It’s like a roller coaster. You have your fun parts and you have your scary parts,” said Emma, 45. “I would not change my life. I would marry him all over again.”
Hand me a screwdriver
The first indication something was seriously wrong with Steve’s brain started with a screwdriver.
The couple, working for a telecommunications company in the fall of 2010, had been dispatched to Breckenridge, Minnesota, as part of a crew upgrading a cellphone tower. It was the first snow of the season. They were just back from a Caribbean cruise on which Steve had fallen ill with flu-like symptoms, though he seemed to have recovered.
On the assignment, in the middle of farmland, Steve asked the other crew member to hand him a screwdriver. But the tool he pointed to was a wrench. And he insisted the wrench was a screwdriver.
Emma, working with the crew as a computer technician, heard the puzzling exchange. Worried, she asked Steve to go back to their makeshift office to do paperwork, hoping whatever it was would pass. But he became even more confused, taking his hard hat off to ease the pounding in his head. He stared at the laptop with no idea how to turn a computer on. It was like his brain had short-circuited. “I turned around and he was just sitting there,” Emma said. “He looked lost.”
I am standing in a dark room and opening a dark closet which is even darker than the room... I can’t pull out that information. Steve Ligeikis
Emma feared Steve was having a stroke. She sprinted outside to let the other crew member know, then bundled Steve into the work truck to find a hospital.
Her husband was a 41-year-old ex-soldier who had survived war and returned home to start the next chapter in his life. He was solid, loving. But in that moment, all of their plans seemed uncertain. Emma looked into his eyes and saw fear, confusion, distress.
“I knew something was seriously wrong,” Emma said. “I was scared that I was going to be coming out of Minnesota by myself.”
Emergency room doctors who examined him initially suspected a neurological condition or a viral infection, but without a spinal tap, they couldn’t know for sure. Emma had one thought: Get Steve home.
A day later, on the morning of Halloween 2010, Steve and Emma and their three cats piled into a blue Chevrolet Blazer and left Minnesota. South Florida was 1,900 miles away.
Emma did the driving. The trip was a blur of tarmac under tires. A former truck driver, she paced herself during the three days. Glancing over to see Steve sleeping most of the way, she was left with hours to think about his unsettling breakdown. She called her sister-in-law, a nurse anesthetist in Atlanta. Deborah Warth assessed the symptoms, trying to rule out a brain tumor. “It was a frantic, frantic time,” Warth recalled.
Steve had experienced chronic fevers since returning from Operation Desert Storm two decades before. He had battled nightmares and fatigue and headaches, symptoms of post-traumatic stress disorder. Emma wondered if this was all connected, if she should have pushed him to go to the doctor more, if she should have searched harder for answers.
‘The coppery smell of blood’
Steve, the fifth of 10 children, had always wanted to be a soldier, like his father and great-grandfather before him. One of his first toys was a Prince Planet action figure, the little boy who battles evil forces. When other kids were reading comics, he was reading World War II books from the library. And he would line up his brothers and sisters at the bus stop after school and march them home in a single-file line.
His brother, Ronald Ligeikis, now a general contractor in South Carolina, said even their games revolved around the military. “We would get ready to play Army outside. I had on a red T-shirt and jeans. Stevie had on fatigues. Stevie had on a bush hat. We both had canteens, but his was in a [military-style] backpack. See what I mean?”
High school meant the military youth training program JROTC, followed in 1987 by enlistment. He joined the Army, of course, and trained at the elite Ranger school in Fort Benning, Georgia, before becoming a member of the 101st Airborne Division known as the “Screaming Eagles.” He served in Saudi Arabia as an infantryman during Operation Desert Storm, did a seven-year stint in the Army National Guard of South Carolina and then re-enlisted in 1998, with a deployment to Kosovo. There, he experienced the aftermath of a brutal attack on a church that nearly killed an 8-year-old girl and her grandparents.
“We arrived to find about a dozen people [all family members] either dazed and peppered with shrapnel from the grenade,” Steve wrote in a journal, part of his postwar therapy. “One uncle with a through-and-through gunshot wound to the right leg — Grandma was shot in the abdomen and legs — and [the granddaughter] was laying in a pool of blood, gray and ashen, with her arm severed just above the elbow from an AK47 round!!!”
He helped get the critically injured child to medical treatment. “For those that have never been around violence, it is not as clean or romantic as it is on TV or the movies,” he wrote. “The smell of detonated explosives, discharged automatic rifle rounds, burning debris . . . the coppery smell of blood.”
He left the military for good in January 2002, with two previous honorable discharges, two Army Achievement Medals, a Ranger Tab and a third round of service that ended in an administrative discharge for what his family now believes were PTSD-related issues. They are appealing the decision.
Back in the civilian world, Steve was struggling — sleepwalking, waking up drenched in sweat. Unexplained fevers struck, his temperature spiking and then tumbling fast.
“There were all these red flags. I would wake up and find him sleeping under a table or a desk,” said his younger sister, Lory Ligeikis. “Or, I would try to wake him up and he would not know who I was or where he was.”
Then, in 2003, he met Emma.
Steve had moved back to South Florida — where his family had lived when he was a child — working at a North Miami Beach company upgrading cell towers. He scaled the towers; she was a dispatcher.
“When he met Emmy, there was light,” said Warth, his older sister. “The smiling, charming Stevie was back.”
Steve thought she was kind and pretty. He was captivated by the shape and intensity of her eyes. Emma went on and on about his smile and how he always had “something cute to say.” They flirted for months, Steve asking her out for coffee, Emma refusing but adding, “We can go for a cup of tea.”
Steve thought she had no interest in him until she invited him to see her belly dance — a hobby at the time — at a show in Miami. The show was canceled, but that didn’t stop the date. Dinner at the Olive Garden ended when the restaurant closed for the night. They walked on the beach in Hallandale until nearly sunrise.
Both were ready for newfound sweetness. Steve was divorced and had a young son from a previous relationship. The boy, now a teenager, lives with his mother. Emma, who grew up in Bayamón, Puerto Rico, with a sister and brother, had divorced in 2002 after an eight-year marriage.
Emma knew Steve had some health problems. She had been warned about the mysterious fevers by his mother, but she wasn’t worried. About 18 months after they met, they married at City Hall in Hollywood in a small ceremony and honeymooned at Disney World.
On the road to answers
After three long days of driving from Minnesota, Steve and Emma made it home. But their medical and emotional journey had just begun. Three years, four hospitals and seven doctors later, they would finally find out what was wrong with Steve’s memory.
Initial tests showed residual viral encephalitis — swelling of the brain — and West Nile Virus antibodies, possibly indicating an old infection. Other tests, measuring his memory and ability to process information, were inconsistent.
But his ability to recall what had happened a day or two before was gone, apparently slipping away between Minnesota and South Florida, and no one knew why. Doctors recommended that Steve turn to the more comprehensive resources of the Miami VA.
There were all these red flags. I would wake up and find him sleeping under a table or a desk. Or, I would try to wake him up and he would not know who I was or where he was. Lory Ligeikis, Steve’s sister
For Steve, the memory loss was upending and frightening, a loss of control that he fought as hard as any enemy combatant. He didn’t want to go to the VA, and tried to climb out of the car when Emma drove there. Some trips were so tense that Emma began playing meditation CDs during the ride to Miami. He just wanted his old life back.
“He was freaking out because he could not remember things,” Emma said. “He knew that something was wrong with him.”
At the VA, where he is deemed 100 percent disabled based on combat-related injuries and illnesses before the memory disorder, doctors began trying to trace the tangled threads of his illness by going backward in time. They started in 1991 with the fevers and bouts of headaches, confusion and fatigue. One civilian doctor thought Steve might have H1N1, or swine flu. A VA doctor suspected West Nile Virus.
They tackled the most obvious symptoms first. Botox shots, as many as 31 at a time, to help relieve headaches. Medication for narcolepsy and PTSD and several other conditions. Therapy, too.
“We were going to so many appointments every week with different doctors and therapists,” Emma said. “We were trying to figure out what was wrong and how all this worked together.”
But the pieces didn’t start to come together until Steve’s neurologist, Douglas Wallace, recommended Klimas, an immune disorder specialist who runs the VA’s Gulf War Illness clinic. Direct, down-to-earth and optimistic, she was doctor No. 7 since Steve had fallen ill in Minnesota.
Klimas started by asking about Steve’s past military experiences, to “help us figure out what was going on with him today,” she said.
Steve talked about the pesticide-soaked uniforms he had worn in Saudi Arabia and Iraq during the Gulf War and about the pills to shield against nerve agents. He remembered the flea collars wrapped around his boots to ward off sand fleas. He remembered the blaring chemical alarms — the piercing ring! ring! ring! — that signaled danger in the air.
For those that have never been around violence, it is not as clean or romantic as it is on TV or the movies. The smell of detonated explosives, discharged automatic rifle rounds, burning debris... the coppery smell of blood. Steve Ligeikis’ journal entry
By the time Steve, wearing his favorite Army baseball cap, had finished describing the occasional urgent orders to “suit up!” in protective masks and coveralls, the doctor was considering a diagnosis: Gulf War illness, popularly known as Gulf War Syndrome.
It’s a perplexing, chronic, multisymptom disorder that affects the body’s nervous system, and it has no cure. But more than a third of the nearly 700,000 combat veterans of the 1990-1991 Gulf War have been diagnosed with it. The VA recognizes the illness but has not confirmed a direct link to pesticide exposure.
Klimas had seen versions of Steve’s story before, veterans exposed to toxic chemicals at war with odd clusters of symptoms surfacing later. But his case had an added layer of complication: He was almost a year into the problems with his short-term memory.
Klimas, who brought a caregiver’s sensibility to her cases after watching her own mother nurse her father as he battled brain cancer, said she thought she might be able to help Steve. Emma began to cry.
“It was like I could see her brain working,” Emma said.
For Steve and Emma, the diagnosis in 2011 — about six months after the screwdriver incident — became one of the first solid steps toward solving the mystery of why Steve could not hold onto new memories.
They had been pushing his case through the VA for months. Three times a week, sometimes more, they had been making the 30-mile one-way trek from Lauderhill to the hulking 12-floor Miami hospital where 60,000 patients are served a year. Now those trips had new purpose.
Over the next few months, Klimas began treating the Gulf War Illness, working to relieve systemic inflammation and restore his antiviral cell function. A spinal tap confirmed that Steve had viral encephalitis. His brain was inflamed.
Upstairs, on the second floor of the VA, Wallace was focused on Steve’s headaches but also his sleep patterns. Wallace, who runs the VA’s sleep disorder clinic, hoped that uninterrupted rest would boost his patient’s memory retention.
He had also put a name to Steve’s form of memory loss: anterograde amnesia, the inability to lay down new memories.
No new memories
Though not truly rare, anterograde amnesia isn’t common. Wallace and Klimas see a handful of patients with anterograde amnesia each year.
“He had very poor short-term recall. . . . He also wouldn’t be able to remember people he had met,” Wallace said. “Just from one day to the next, he seemed to not be able to recall information.”
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Initially, he prescribed medication for Alzheimer’s patients to try to restore Steve’s ability to hold onto memories. That did not help. The conundrum: Doctors needed to tap Steve’s memory to figure out when and how things began to go wrong. They needed his memories to understand what was wrong with his memory.
“So much of neurology hinges on the details. If we could have treated him during the acute phase, we might have had more of the story,” said Wallace, a University of Miami Miller School of Medicine assistant professor of clinical neurology.
Still, Wallace and Klimas saw possible ties between Steve’s illnesses and his memory problems. Viral encephalitis — brain swelling — can impair memory.
“The inflammation can cause cognitive problems, but it all depends on how much swelling there is,” added former VA neuropsychologist Lisa Johnson-Greene, whose 2015 tests concluded Steve had Major Neurocognitive Disorder, a broad diagnosis that can include anterograde amnesia. “Just like rubbing on your shoe, you get a blister on your foot and then you get a sore. It’s the same principle: You are pushing against areas in the brain.”
Klimas believes Steve’s exposure to chemicals years before had compromised his immune system, setting him up for a particularly virulent virus and, eventually, encephalitis. “It turns out that pesticides, when you look at the data, are probably the single most important exposure that increases the risk of Gulf War Illness,” she said.
Now doctors began to think about how — or if — they could make Steve’s brain better, possibly by creating new pathways to carry the memories to long-term storage.
His connections to today and tomorrow are severed. Dr. Nancy Klimas, director of the Institute for Neuro Immune Medicine at Nova Southeastern
Klimas outlined the challenge doctors faced. “The insult has come and gone. He already had the encephalitis. Is there anything we can do now that could either protect his brain from further damage or help him repair the brain?”
She thought there might be room for some improvement in Steve’s case.
As the VA team worked on Steve’s symptoms, his memory problems became more apparent by the day. During a Disney World trip in September 2013, Steve’s sister Brenda Simmons joined them. She was almost five months pregnant with her third child. Yet each time Steve saw her during the vacation, the pregnancy was new to him.
“That’s when it really hit home for me,” said Simmons, who named her son after Steve. “Every day during the trip I had to remind him I was pregnant. Later, when we would talk on the phone, I would mention it and it was like a surprise to him.”
Doctors and scientists are still learning the intricacies of this form of amnesia, how it works to halt creation of what we think of as short-term memory and what part of the brain it affects. The disorder can be caused by drugs sometimes used to treat insomnia and anxiety, by a traumatic brain injury or an illness that causes encephalitis, as in Steve’s case.
Explaining the diagnosis to Steve presented another challenge. Though he is able to understand the condition in the moment, he cannot retain the information. Emma shared the label with him over and over until it softened into simply accepting he was “forgetful.”
The amnesia left Steve with his last reliable memory rooted in the summer of 2010.
“Emmy and I went to Niagara Falls, I remember that. I remember driving back down to Miami. After that, everything for me starts to fade,” he said. “I don’t know really what, where or why it happened.”
For Emma, the anterograde amnesia diagnosis matched the results of her own research on memory disorders. But to hear it from a professional offered both relief and heartbreak after years of managing his medical treatment, taking him back and forth to doctor appointments, witnessing the blankness as he struggled to remember the most basic stuff from the day or two before.
Putting a name to the problem — amnesia — forced a reckoning for Emma. Deep down, she had also been in a denial of sorts. To believe that Steve had lost his ability to make new memories was to believe she was losing part of him. And them. She wondered if love could evolve without the nourishment of memories.
“I wanted to be wrong. I didn’t want to have to say to myself that this is it. I didn’t want to have to think about what that meant for the rest of our lives,” she said, eyes welling with tears.
Confronting her fears, though, became a call to action. “I wasn’t willing, I am still not willing to give up hope that Stevie can get better,” she said.
His siblings, too, couldn’t quite grasp the diagnosis at first.
“It wasn’t that we didn’t believe it was real, it was coming to terms with how could this happen to our brother,” said Warth, who has been a nurse for more than two decades. “You talk to him, he remembers you, speaks of you fondly, loves you. But he might not remember your kids. In some ways, it’s like he is paralyzed, only it’s in his brain.”
‘Will he remember me?’
Emma sat down in the guest bedroom, packed with hundreds of Steve’s medical records, to send an email to family members.
She had noticed an alarming development: When Steve studied a new photo of three of his siblings on Facebook, he couldn’t place one person’s face. He recognized his younger brother. He recognized one sister. But the other woman, he earnestly believed, was a friend. It was his sister.
His capacity to recognize his family, critical to his core identity, was fading. With his short-term memory shot, his mental photo album of his family was now five years in the past.
“Time is running out,” she wrote, “and soon he will have no idea who anyone is because of how we all change as time goes by. . . .”
No one knows whether his memory will get better. Some doctors believe he has plateaued; others think he could learn to make memories again. Emma has sent Steve’s neurological records to other medical centers that specialize in memory disorders, hoping for new treatments or help.
I wasn’t willing, I am still not willing to give up hope that Stevie can get better. Emma Ligeikis
But for now, they have to adapt to life with Steve’s anterograde amnesia. And that means a lot of changes. His memory loss, they began to realize, touches almost everything.
Dr. Barry Gordon, director of Johns Hopkins University School of Medicine’s Cognitive Neurology/Neuropsychology Department
Dr. Barry Gordon, director of Johns Hopkins University medical school’s cognitive neurology and neuropsychology division, said dealing with this type of amnesia is complicated because, depending on the severity, the person with the impairment may know something is different but not be able to put their finger on what has been altered. “In general, people with anterograde amnesia remember who they are, their identity, the people before the episode,” he said. “They usually know that they have a problem, intellectually.”
Emma, long Steve’s emotional center, has also become his chronicler and archivist, continually reacquainting him with his own life and preserving the most precious experiences. “I can’t imagine what my life would be without Emmy,” Steve said.
Emma understands her responsibility grows with every passing day.
“I have to remember for both of us,” she said. “One of the things I miss most is being able to look over at him in a conversation and say, ‘Oh, remember when we went here or there.’ ”
But of all the challenges Steve’s amnesia presents now, it is the future that scares Emma the most.
“What happens in a couple years when I have gray hair and wrinkles? Will he remember me?” she said, staring down at the dining room table. “And when he looks in the mirror and sees a 60- or 70-year-old man, how will that affect him emotionally? That is the stuff that worries me.”
Happily ever after
Emma has created a system to fill in the blanks. It starts from the moment Steve wakes up to a lavender-colored bedroom he does not recognize. Usually, he thinks he is in a hotel room on an out-of-town work assignment.
A dry-erase board next to his side of the bed acts as a quick primer to start his day. It includes today’s date, the daily schedule, a picture of the couple together and a photo of Alek, who died on St. Patrick’s Day. The caption reads: “He resides in one of his favorite spots, Mom’s Garden. . . Now he is chasing lizards and watching over us.”
A bulletin board in the bedroom of Steve and Emma Ligeikis is posted to help him remember basic details, including today’s date. A Facebook posting shows their recent visit to Morikami Japanese Gardens in Boca Raton. CHARLES TRAINOR JR / firstname.lastname@example.org
On the wall of their living room: a large script decal — The Ligeikis Family, est. 2005. It is a gentle reminder for Steve that he’s in the right apartment. And next to the name, above the bedroom door: Happily Ever After.
More hints are taped to the back of the front door where Steve can’t miss them in the morning as he feeds the pets. Photos are posted of the three cats — a couple of times he has forgotten Kelly, thinking she was a stray that had wandered into the apartment. There’s also a picture of their car, a silver Ford Escape. In his memory, they still drive the blue Blazer.
A stop sign on the door is there to keep Steve from opening it to visitors — they are all strangers to him unless he knew them before 2010. Alarms and chimes are on the door to alert Emma if Steve steps outside.
With the aid of modern technology, Emma has restructured life with her “Stevie” to rely less on organic short-term memories and more on recreated memories that can be experienced over and over again. When she realized Steve needed a way to remember his doctors, appointments and his “external memories,” she converted his smart phone and Facebook page — he knew how to use Facebook before 2010 — into a lifeline, preserving images of his days and allowing him to relive the moments.
Low-tech ideas have worked, too. Steve and Emma have put together a scrapbook with the names and pictures of his VA team, about 20 in all, to prompt him. Calendars posted throughout the apartment feature pictures of family and friends on their birth dates.
In one photo, Steve is swimming in calm waters at Island Dolphin Care, head tilted towards the sun, the smile on his face matched by his wife’s. It had been a perfect August morning, hot and lazy, during a day spent in Key Largo in a recreational therapy program for wounded veterans. Steve described the joy he felt as he “danced” with a dolphin named Squirt in the water — “I think he adopted me!” he told Emma.
Two weeks later, he couldn’t recall any of it. He closed his eyes and tried to retrieve the memory. He didn’t remember hugging Squirt. Or the black rubber suit he wore into the water. Or the dolphin designs he painted on a T-shirt after the swim.
But he had the picture on his cellphone. The adventure had not been entirely lost. In bright pixels, his memories last forever.
“I don’t remember this, but it’s an image that tells me a thousand words. I am happy in that picture and that makes me happy,” said Steve, smiling at his own image, phone in front of him on the dining room table. “It’s like an external memory.”
Throughout this ordeal, Steve has relied on his military training. He quickly adapted and follows the routines Emma has set up. He doesn’t focus on his illness, he said, because that “would really bring me down.”
Like most people with anterograde amnesia, Steve retained the skills he knew before: how to drive, how to scuba dive. He also has some capacity to learn new skills, mostly based on sheer repetition.
The condition did not change his personality much. He remains quick to smile, with a dry sense of humor. He is skilled at weaving yarns. And he has a fondness for military-style precision in household tasks like folding the laundry.
“I don’t get frustrated about not remembering. No matter how many times something happened, it will be the first time for me, so what might drive you mad, is sort of like, hmmm, to me,” he explained.
‘What if you write it down?’
For two years, cognitive therapist Nadia Butcher has worked with Steve to learn ways around his amnesia. Rule No. 1: Write everything down.
“I get him to journal about an activity, what happened but also how he feels about it,” said Butcher, a speech and language pathologist at the Miami VA. “That way, the experience is grounded with emotion behind it. He may not remember it, but when he goes back, he can have a fuller picture.”
An electronic journal offers a glimpse into his world. From Oct. 23: “We saw the movie The Martian today, followed by a meal at Chili’s. A great ‘Date Day,’ for me and Emmy! . . . Watched Fear the Walking Dead, which was the season finale. . I don’t remember if I saw the other episodes, but tonight’s was a good one. . . .”
One recent morning, Steve woke up with a crushing headache. As he ate a bowl of cold cereal, he told Emma his head was jammed with questions colliding like bumper cars.
“What’s going on?” she asked.
“I have all these questions and I can’t focus on any one of them,” he said, head in his hands.
“Well, what if you write it down? Maybe I can help you with them,” she said.
Steve finished his breakfast and sat in the living room to write. That afternoon, as Emma was paying their monthly bills in the office, he handed her three pages with 21 questions in his neat, precise handwriting.
Where do we work/make a living? Will I be recovering my memory? What happened with the Blazer? What happened to Alek (I saw the note)? Who is Kelly (the cat adopted two years ago) and what happened to her ear? Are you all right?
And: Why can’t I recall yesterday?
Emma stared at the questions, the sum of the last five years.
“It was like a cold shower. I just wanted to cry. When you see it all written down . . . ,” she said, her voice trailing off.
After speaking with their therapists, Emma decided she would make a video that answered his questions, something that could be uploaded onto his phone and tablet. Something he could refer to over and over.
Care for the caregiver
Steve and Emma’s life is a study of love’s endurance after the battlefield. It’s a narrative playing out now more than ever. After protracted wars in Iraq and Afghanistan coupled with medical advances, soldiers survive but require, in some cases, a lifetime of care. That responsibility is most often met by spouses, siblings, even parents — veteran caregivers.
In 2010, Congress passed the Caregivers and Veterans Omnibus Health Services Act, a comprehensive piece of legislation for post-9/11 caregivers. Three years later, Emma officially was designated a caregiver, with a temporary monthly stipend of about $2,000. The VA also sometimes provides a nurse to stay with Steve. That allows her to go to the store or to run errands, but even then, she worries about Steve the whole time.
Now one of the 1.1 million post-9/11-era military caregivers, Emma joined a support group at the Miami VA, a community of people bonded by similar stories of caring for loved ones hurt physically and psychologically while serving.
“She basically had the spirit of facing life head on,” says Martha Corvea, a clinical psychologist who facilitates sessions as part of the Miami VA’s caregivers’ support program. “She said, ‘I am not giving up, I am moving on. Show me how to get it done.’ ”
The day Steve and Emma planned to take a trip to Orlando to celebrate his 47th birthday, she woke up feeling lightheaded, with tightness in her chest. Emma drove herself — and Steve — to the Miami VA, fearing she was on the verge of a heart attack. Doctors called it something else: a stress attack.
After an overnight hospital stay, though, they headed to Disney World, their honeymoon destination a decade ago. It’s a favorite, where life together still can be stripped down to its essence: a husband and wife.
In a few days, they returned to their usual routine, navigating that familiar drive south on Interstate 95 to downtown Miami, back to the VA for Steve’s headache treatments.
When his appointment was over, they walked along the main first-floor hall, bustling with veterans of most every war since World War II.
Emma was on the left, Steve on the right.
Steve wore his black Fort Campbell Army baseball hat.
Emma moved in closer and caressed his shoulder.
They walked in silence, heading toward the door to leave the hospital.
She reached her hand toward Steve.
His was already there.
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