Chapter 1: Christine's Choice
The phone rang early, before dawn had crested the fall foliage in Taos, N.M.
Christine Schei sleepily ignored the intrusion until she heard her husband say his Social Security number, and then she launched out of bed, dashing to the living room.
The receiver shook in Gordon's hand.
"It's Erik, isn't it? Is he dead?"
Their first-born was alive, Gordon told his wife. But it was bad.
He was shot in the head.
"Didn't he have his helmet on?" Christine wondered aloud, not yet fully processing the news from Iraq.
Erik Schei had come home from his first deployment to Iraq a little angrier than normal, but otherwise the Army had returned him to his mom unharmed. When he left for war again in January 2005, Christine carried the daily dread of a son in danger but still had expected the same. It was October, and in just a few more months, her 21-year-old son was due home.
The caller on the other end of the line offered little information, so Gordon and Christine filled in the blanks with their hope.
The doctors will stitch Erik up.
He'll just need time to recover.
He'll be OK.
Despite the flurry of medical staff and the machines beeping in the background at Bethesda Naval Hospital a few days later, that prospect didn't seem too unreasonable at first. Erik looked like he was sleeping, as if, even with the tubes, he was in that hospital bed only because it was a comfortable place to nap.
Outside in the hallway, 18-year-old Deven Schei held his towhead little sister, too young to go into the room, the doctors said. A poster with "Get well soon Erik" scribbled in Anneka's 4-year-old hand hung on their front door back home.
The Scheis stood helpless at Erik's bedside as a fusillade of medical jargon flew at them.
Erik had "parenchymal hemorrhage and edema," "hyper dense fluid in the posteriolateral ventricles bilaterally," "extensive periventricular contusion," "fluid within the mastoid air cells."
On the outskirts of Mosul, Iraq, Erik had been in the turret of a Humvee, manning the gun he called "Big Baby Jesus," when an armor-piercing bullet shattered his skull above his left ear, ripped across his frontal lobe and blasted out the right side.
Now, he lay practically lifeless in a coma with the top half of his skull missing. Only skin afforded flimsy protection for his brain.
The hours that first day at the hospital blurred together, dominated by a grim refrain.
"Severe, severe brain injury."
"Severe, severe brain injury."
Deven could hardly look at his big brother, the man he emulated, who had taught him how to shave and how to drive, lying there helpless. He'd just gotten the relationship with Erik that he'd always wanted. No longer shrugged off and left behind as the kid brother, Deven was included in Erik's adventures as a confidant. They swapped near daily emails while Erik was in Iraq.
The two brothers last saw each other five months ago at Deven's high school graduation, when Erik surprised him by showing up in uniform on R&R from Iraq. Deven's head swam from that happy memory to the misery of not being able to do anything for his brother. The impotence was overwhelming.
Erik's brain was swelling dramatically, causing off-the-charts brain pressure. He couldn't regulate his body temperature, so despite cooling pads on top of his entire body, his temperature was dangerously high at 103 degrees.
Erik's "extensive post-surgical and post-traumatic change to the brain" was likely irreparable, the doctors said. He had multiple metallic and bony fragments embedded in key parts of his brain, which had so damaged the surrounding tissue, those areas likely suffered a total unrecoverable loss of function. The doctors didn't think Erik would wake up, and if he did he would be in an open-eyed coma.
They urged the Scheis to take Erik off life support.
Gordon began to plan the funeral. Before Erik deployed he told his dad that should something happen he didn't want to live if he couldn't live independently, and despite onerous sadness, Gordon had every intention of following through on the promise he made to honor those wishes.
No, no, no, Christine resisted.
There was so much she didn't understand about her son's condition. She swore he fluttered his eyelids when she spoke to him.
Christine retreated to the chapel. Kneeling in the pew for just a few minutes, she asked God to please tell her if it was Erik's time to go.
As she was leaving, she went to the Bible on the stand and saw it was open to Psalm 23:
" ... though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me ..."
It was Erik's favorite passage. He had gotten "Psalm 23" tattooed on his chest as a teenager, telling his mother at the time that he would need it one day.
Erik had been a rebellious child who mostly failed at school, but then as the end of high school neared, he left behind his bad attitude as if taking off a jacket that he no longer found stylish. To the surprise of his family, he joined the Army, like his dad had done.
In the chapel, Christine had her sign. They would not pull the plug on Erik.
Gordon raged through tears that it was a betrayal of their son. That they couldn't do that to him. Didn't she hear what the doctors had said?
Christine demanded the doctors produce something, like a printout of his brain activity, that proved without a doubt that he wouldn't recover, and they had nothing that concrete to offer her. There are no definite answers with brain damage and recovery, so it was impossible to say with 100 percent certainty, the doctors told her.
The decision to keep Erik alive was the first shard to hit Christine and Gordon's marriage in the aftermath of Erik's injury. Gordon railed against her choice for days, but then the pilot light went out. They just didn't talk about it anymore.
At the Minneapolis Polytrauma Rehabilitation Center one winter day a few months later, Christine wrapped Erik in a blanket, put on his protective green medical helmet and pushed his wheelchair outside. His little sister, Anneka, rode along, plopped on the tray in Erik's lap.
The weather wasn't inviting, but regular trips out of the hospital room were important to Christine. Her son needed to sit up and go places. People weren't meant to lie in bed all day. That's for dying.
She and Anneka had arrived at the VA center with Erik in early December, about six weeks after he was shot. Gordon wanted to be there too, but there were bills at home to pay.
He stayed behind in Taos to keep working as head of security at an Indian casino. Gordon didn't spend much time at the mostly empty house, eating his meals out, and he went on anti-depression medication to help him cope.
Shepherding Erik through recovery was on Christine's shoulders.
Erik was awake and breathing on his own, but he couldn't communicate, not even through facial expressions. He just blinked blankly at Christine.
Never a big man at 5'11, Erik still looked shriveled, weighing a mere 139 pounds - about 50 pounds lighter than his normal self. His Gemini tattoo loomed larger now on his skinny chest.
When Erik was home on R&R during his first deployment to Iraq in 2003, he persuaded Deven to get matching tattoos with him of their respective zodiac signs. Erik asked Deven while they waited for their turn in the tattoo shop's parking lot if he could make a promise.
"Sure. Anything for you," the 16-year-old Deven told his big brother.
"If anything happens to me," Erik said. "I want you to finish what I started."
Deven vowed he would join the Army if Erik got hurt. The high school sophomore's new tattoo signified more than just astrology; it was an inked stamp that sealed a pact between two brothers.
A few months after getting shot, Erik's brain was still protected only by skin.
Christine scrutinized his face as she pulled his black sweatshirt over his head to get him dressed. Was he flinching? She shifted him to the side and his brain sloshed against his skin.
That January day in 2006, Erik's former platoon sergeant strode into the hospital room wearing his Class A uniform. Erik lit up at the sight of him, clearly recognizing his old leader.
He was there to give Erik the Purple Heart, and as he read the citation and pinned the medal on Erik's chest, Erik bawled. He seemed to understand what was happening, even though he couldn't express himself beyond tears.
As the winter in Minnesota began to thaw, attention turned to fixing Erik's skull. He needed what was the largest prosthetic skull piece the military doctors ever had to produce.
The operation would be long and complex and would require 3D modeling of Erik's skull to match the prosthesis like a puzzle piece to the jagged edges that remained.
In March, the VA's neurosurgeon came to discuss the cranioplasty with Christine. She sized up the green resident quickly and shook her head.
"Oh no, that's not going to happen."
Christine yanked Anneka out of the school she'd just started in Minneapolis and packed up for the East Coast, back to Walter Reed where there were more experienced doctors.
The military paid for one person to travel with Erik, so for each plane trip, Christine reached into her and Gordon's savings for Anneka's ticket.
Christine and her daughter moved into the Mologne House, a hotel on the Walter Reed campus. They shared a bed in a cramped room with a TV, a writing desk and a mini fridge. Without a car and only $25 per diem from the military, the two rarely left the hospital.
Kissing Erik goodnight with the promise they would be back tomorrow, Christine took an antsy and tired Anneka to the hospital cafeteria for dinner. The pair was a familiar sight. They ate every meal there.
Back in the room, Anneka clutched her favorite doll and nibbled on a piece of the giant cookie Red Cross volunteers had surprised her with for her fifth birthday. Then she and Christine hunkered together at the small desk to do the math workbooks that substituted for school.
Nighttime exaggerated their lack of space and boundaries. Long before her mind had a chance to relax, Christine turned off the TV so her little girl could sleep.
Later that spring, Erik's cranioplasty was a success, and even though he still wasn't talking or interacting much with the world, the prosthetic skull piece made him look more like himself.
By May, he had recovered enough from the surgery to leave Walter Reed.
Except Christine was at a loss of where to go.
No one had the faith in her son that she did.
In the opinion of the doctors at the polytrauma center in Minnesota, Erik wasn't going to get any better. He wouldn't walk or talk. He wouldn't eat. He would never be the same son again.
For everybody's sake, Erik belonged in a nursing home, they told her.
Christine pulled back as if she'd been slapped.
"He's 21 years old! How can you even look at me in the face and tell me to put my son in a nursing home?"
Erik would die there. He would think she just threw him away.
"My son deserves better than that."
He just needed time, she pleaded.
She read articles that said the brain is able to rewire and build new pathways. That wouldn't happen in just a few months. Think of how long a complicated break to the arm takes to heal!
She begged to no avail. The Minnesota VA denied Erik a spot back in the polytrauma center's rehabilitation program, saying it simply wouldn't benefit him. Erik wasn't going to improve.
Christine was stunned to discover that the VA could turn her son away. The top-notch rehabilitative care she thought Erik was automatically entitled to was instead doled out on a case-by-case basis. There was no set path for veterans, particularly with severe head injuries. The VA doctors assessed each veteran's chances of recovering, and if the prognosis was bleak, they wouldn't provide intensive rehabilitation.
From the beginning of Erik's injury, Christine was too overwhelmed to assign blame, but the anger surged now. This was not how she gave Erik to the Army. Now they were just going to say, "Sorry, you're on your own"?
Feeling abandoned by the VA, the one group she thought her son could count on, Christine resolved to continue on her own.
She took Erik home to New Mexico and swore she'd marshal whatever was needed for Erik to recover.
That May 2006, Erik moved into an inpatient facility in Albuquerque, and Christine and Anneka rented a house nearby, using Erik's E-3 paycheck to cover the $1,000 rent.
Erik wasn't yet medically retired, so Christine was able to bypass the VA for the time being and go through the Army. The military covered the costs for the civilian treatment facility.
Christine had narrowed the distance among her family, but Gordon was still working in Taos and renting an apartment there. He struggled with seeing his family only on the weekends, but they couldn't afford for him to give up his job. It paid well, and without Christine's $20,000 salary as an office manager, money was tight.
Their weekend marriage meant Christine still shouldered the day-to-day with Erik.
Headed to the hospital for another long day, Christine looked at her little girl, bouncing with energy and desire to play, and just couldn't drag her along to be cooped up again in the fluorescent hallways. She asked a neighbor to sit with Anneka.
As the one-year anniversary of Erik's "alive day" approached, he was making slow progress. He had gained back some weight and appeared to comprehend what was going on around him, but he still couldn't talk. He grunted and moaned, sounding to Christine like a caveman.
Erik had little control over his body. The bullet essentially erased Erik's hard drive for movement, so his brain wouldn't send the signals to his muscles to do what he wanted. Even though he wasn't paralyzed in any way, he could hardly move his body.
Erik lacked control of his trunk muscles, so he had to be strapped into the wheelchair to keep him from sliding down. His head lolled to the side, and he couldn't perform basic functions like swallowing.
To help him with that, the therapists zapped his throat with electrical nodes to trigger his muscle memory, and he relearned how to move his cheeks and tongue to suck. Christine ran through the hospital hallways telling everyone she saw that her son just drank through a straw.
It was one check in the box that the Minnesota VA doctors said he'd never achieve.
In September 2006, it was time to follow through on her choice to take care of Erik. He moved home.
She told the skeptical doctors on the way out the door, "If I fail, I'll call you."
Not that she was fearless. She tempered her anxiety with an acknowledgment that if she had made the wrong choice, they could still put Erik in a long-term care facility.
But she didn't want to give up before she tried.
The list of what she had to learn was daunting: how to change Erik's diaper, dress him, look for open sores, manage the feeding tube. Things she never thought she'd have to learn.
Can I do this physically? Can I do this mentally?
She tried to quiet her doubts.
Christine felt like she did when her kids were infants, just making her best guess about what Erik needed. Maybe he was uncomfortable. Or tired. Perhaps thirsty?
Sometimes two or three times a night, Erik roused her from bed with sounds of distress. Erik's nights grew worse as he became more cognitively aware, because he had bad dreams. She'd find him sweaty and upset. He couldn't tell his mom what was waking him up, but she suspected it was visions of the war.
One afternoon at rehab in the early winter, Erik's occupational therapist was pushing him hard with exercises that exhausted him. The therapist got right up in Erik's face and loudly taunted him.
"Should we keep going, Erik? Should we keep going?"
Erik just grunted his displeasure.
"Want to keep going, Erik? Huh?"
More than a year after getting shot, Erik said his first word.
Christine burst into tears.
"Yes!" she thought, feeling a rush of relief and excitement as she hugged her son. "We are on our way!"
Later that winter, Erik said his second word, calling out "Mom!"
Christine hadn't realized until then how much she'd been waiting for that moment.
Erik was speaking only sporadically, one word at a time, and he only ever said it under duress from his therapists, but it still helped quiet the fear that maybe the doctors were right and he wouldn't talk again.
Then, just as Christine was settling into their routine, Erik was displaced again.
In December, about 14 months after his injury, the outpatient hospital where Erik had been going told Christine that his progress was too inconsistent for them to treat him anymore. He'd have to leave.
Christine went back to the VA and was approved for a couple of hours of outpatient therapy for her son each week.
As Christine prepped Erik for the almost hourlong drive to the VA in the southern part of Albuquerque, Anneka peered into the room, looking for attention for one thing or another that pops up in a 5-year-old's world.
"Can you wait a little bit?" Christine asked. "I just have to finish this for Erik."
Going to the VA was a production that wore out Christine and Erik, so she soon asked for and was granted home health care.
Christine focused on getting the VA to forget Erik's limitations and instead build on what he could do. Even though Erik couldn't yet participate in the world, he could soak it in.
She wanted to build momentum on what he accomplished. Her goals were to develop his speech so he could interact with his surroundings and respond to conversation, build more upper body strength so he could control his neck and sit easily, and work on his short-term memory.
In August 2007, almost two years after Erik was shot, the Scheis used some of Erik's standard $100,000 insurance payout from the Army to buy a ranch-style house just north of Albuquerque in Rio Rancho that could better accommodate Erik's needs.
With $50,000 in benefit money from the VA, they outfitted the house with a large therapeutic pool complete with a lift to lower him into the water, a custom-made shower off his bedroom, and a large therapy room, reminiscent of a dance studio with glossy hardwood floors and ceiling-high mirrors lining the walls.
Christine filled the therapy room with equipment that would teach Erik's brain to move his body again. To stand. To walk. To be himself.
She was confident her son now had the tools he needed to make real progress. The road was long, but he would get better despite what the doctors said. Erik just needed the right therapy, time and support, she was certain.