Chapter 3: Reality sets in
Christine hustled into the still-dark room in the corner of the ranch house where her 28-year-old son, lying motionless on his back in bed, waited for his day to begin. She leaned in close to him and reported that today was Friday.
Each morning, she gives Erik an accounting of the day to come. What kind of therapy he’ll do. Whether there might be an outing to the store.
Anticipating the day’s events provides Erik with a small sense of control.
The day started like it almost always does at 6:40 with the prompt arrival of Hilda Munoz, a nursing aide who, out of the bevy of medical assistants, has been with the Schei family the longest. She and Christine worked in swift tandem to get Erik ready for the day.
At the side of the bed, Christine reached across Erik’s body and, trying not to use her aching hands, pulled him toward her with her elbows and forearms, rolling him onto his side while Hilda scooted the diaper out from underneath him. Then they rocked his sweaty T-shirt up over his head.
“The war ... hot ... 130, 30, 30,” Erik said, billowing out the words in puffs.
“One hundred and 30 degrees, yeah,” Christine echoed back to him, nodding without pausing her routine. The heat in Iraq is one of Erik’s favorite topics. It’s a conversation he starts again and again, his injured brain caught in a loop.
Erik has been imprisoned in an insubordinate body since a bullet tore through his head 6½ years ago. Doctors told Christine he wouldn’t ever recover enough to have a normal life and she should put him in a nursing home. Instead, she took him home to care for him, hoping that with her determination and support, he would defy the odds.
After a quick wipe down with a washcloth, Christine held up a red shirt and asked Erik whether it was OK.
The two women rolled Erik this way, then that way, then this way, then that way to dress him, careful not to knock the condom-style catheter out of place.
Hilda shifted the motorized bed into a sitting position, and Erik placidly held open his mouth for the toothbrush. Then, grinning, he enthusiastically spat into the bucket that she held under his chin.
With the bed flat again, they rolled Erik back and forth to place a hammock-like sling underneath him and attached it at four points to a tracking system in the ceiling, which like a crane lifted the Army sergeant’s dead weight. His shoulders squished tightly to his body and his legs folded up toward his chest, he hung a few feet above the bed, like he had been scooped up in a net.
Christine pushed a button on the remote, and Erik moved slowly along the track to the right until he was hovering over his wheelchair and lowered down.
Twenty-seven minutes after they started, they had Erik dressed and out of bed.
Time has a way of eroding expectations, subtly at first, but the point comes when the change is unmistakable. Throughout the nearly seven years of taking care of her son, Christine re-calibrated enough times to become sober about what Erik might achieve.
She accepted that the window for recovery wouldn’t stay open forever and that one day Erik’s slow progress would end. Christine encouraged herself that at least he never went backward.
On days she needed a pep talk — maybe the catheter leaked all over the wheelchair pad or she was up with Erik three times in the middle of the night — Christine reminded herself that if she put him in a nursing home with old people waiting to die, he would shut down, thinking nobody wanted him, nobody cared.
Christine shook up a bottle of Starbucks Frappuccino and poured it into a glass with a straw. She held it up to Erik’s lips for a long sip and with her other hand stirred his daily breakfast of oatmeal, the same instant packets she used to send him in Iraq.
With her own plate empty in front of her, she blew on Erik’s oatmeal and lifted a spoonful up to him. A bit dropped onto his lap.
“Am I making a mess?” Christine asked lightly, shaking her head and dabbing at his shirt with a napkin. “You should fire me. This is ridiculous.”
The two of them laughed, Christine’s head almost close enough to rub noses.
It was the kind of moment that carried them through. Christine is blunt about their situation, never softening reality for Erik, but always making sure they laugh often.
The first therapist of the day arrived just as the meal was ending, and as she pulled Erik’s wheelchair back from the table he asked what was for lunch, ever fixated on his schedule.
With so many personal care assistants coming in and out of his life, Erik took some time to warm up to them, but he had grown comfortable with Kathy Tafoya. As she got him settled in his first rehab exercise, the two giggled about a session earlier in the summer when Erik had affectionately teased that Kathy would be too heavy for the tracking system to lift.
“Funny, funny, funny, funny, funny!” Erik rapid-fired in one breath, with his head forward, neck strained and eyes wide, forgetting to breathe. Then with a sharp, high-pitched inhalation, he relaxed back against his headrest, red-faced and laughing.
The Scheis didn’t discover the tracking system to lift Erik until a few years ago. No one thought to say, “Hey, Christine, Erik’s a big guy, this might really help you.” But that’s how it went. The VA didn’t have a list of equipment and rarely offered suggestions.
As caregivers, Christine and Gordon wouldn’t find out information unless they posed precisely the right question — and how were they supposed to know what to ask? Christine knew there were other things out there that would make Erik’s life better, if only she had the prescience to figure out what.
Moving onto the next set of exercises, Kathy prepped Erik for the tracking system to carry him to the therapy table, and she asked him what he thought about everything his mom did for him.
“Cool. I love her. Lots.”
Once on the table, Erik laid on his stomach, grunting and watching himself in the mirror as he strained to push himself up about half a foot. He had regained enough control over his upper body that in certain positions, he could move himself.
Twelve-year-old Anneka wandered into the back of the room and looked on from a distance. Her hair was flat-ironed and her lids were heavy with eyeliner, but she had nowhere to go on that summer day.
Christine had wanted to sign her up for camp, but it started first thing in the morning, and with Erik … well, Christine just couldn’t make it happen for her little girl. Anneka shrugged it off, always eager to please.
Despite almost her entire life revolving around the needs of her older brother, Anneka never rebelled. Instead, she tried to stand out and earn attention by being a straight-A student and helping around the house, as if just doing well enough, just being good enough, would make someone really notice her.
Today she just watched her brother.
Christine, able to keep herself from meddling in the therapy session for only about an hour, strode in to check on Erik and see how she could help. Kathy as usual tried to shoo her away, insisting she should take the time to herself, but the two ended up chatting like they always did as Christine helped to move or encourage Erik.
The caregiving isolated Christine, remanding her mostly to the ranch house. She learned to be careful with the therapists and personal care assistants. They cycled through so fast and didn’t stay in touch like they said they would. But friends were hard to come by for Christine, and Kathy was one of the good ones.
Christine had fought hard with the VA for two years to get the care assistants. For years the VA therapists told Christine she needed to exercise Erik and work with him every day on his skills, but she was already his mom, his caregiver, his accountant and his maid, not to mention a wife and a mother to two other children.
“I can’t be his therapist on top of it,” she pleaded with them.
The Albuquerque VA told her they’d look into it. In the meantime, she paid a student $20 per hour to come by a few hours every Saturday and work with Erik. She put up a poster at the University of New Mexico to hire more students for other days of the weeks, but no one responded to her ad.
Christine figured the VA hoped she’d give up, but every month or so, she called and asked about the personal care assistants. Finally, VA headquarters in Washington approved her request.
In the therapy room, along the yellow and orange walls, multiple rehabilitation machines for walking sat unused.
Christine hadn’t completely given up the dream that Erik would one day walk again, but she didn’t talk about it much anymore. Teaching him to just stand would be enough, widening his world by removing obstacles, like the kind getting on a plane imposed. But she knew even standing was asking a lot.
She focused instead on his arms and hands. Erik could forge some independence if he could feed himself, reach for his water instead of calling for Mom to put to the straw in his mouth, and operate an electric wheelchair with his fingers. Christine’s expectations might have ebbed, but she pushed just as hard. She knew these small feats would have outsized impact on Erik’s life, and if she kept striving for something more, it meant she hadn’t relinquished hope.
Christine had earlier suffered a moment of profound self-doubt.
Maybe this is just about me. Maybe I’m pushing him too hard to get better. Maybe he doesn’t even want that. Maybe he wished he died because he doesn’t want to live like this.
Fighting back tears, she went to Erik.
“Are you angry that you survived?”
He looked into his mother’s eyes, the woman who had become his entire world, who had devoted herself to him after making a choice she could never take back.
He told her no.
Walking backward into the van through its side sliding door, Christine heaved Erik’s wheelchair up the ramp, lifted and scooted it inch by inch to face the front and pushed him into a locked position where the front passenger seat used to be.
She rubbed the pain in her hands, indignant at the body that betrayed her.
The autoimmune disease scleroderma had been lying dormant in her system, but after Deven was hurt, the stress of a second child injured in war sent it roaring to life. It attacked the connective tissue in her hands, ankles and knees. Though her joints were often swollen, she walked well enough. It was her fingers, locked like claws, that gave her the most trouble.
Rap blared as they drove to the grocery store. Erik sang along, excited to be headed out to shop, his favorite activity. He loved going to Best Buy for new rap and hip-hop CDs to listen to on his Discman. Erik fancied himself a gangster. In Qatar on R&R from Iraq, he had bought diamonds that he wanted to have put in his front teeth for a flashy grill. Christine still had the gems in a drawer somewhere. She didn’t know what to do with them.
In the store, Erik grinned at the shoppers who couldn’t help but stare a little as he sat by himself by the bin of bananas while Christine dashed around the produce section. The bullet that cut through his brain took out his predilection for moodiness. These days he was always smiling and cheerful.
When they got home, Erik sat in the living room by himself, listening to his favorite group, Wu-Tang Clan.
Over the past few years, Erik had made promising strides in his mental abilities that put him well past what the VA and military doctors had predicted for him right after he was shot. Christine found a smug joy in that and vowed to one day go back to the Minnesota VA to show them just how wrong they were.
A big leap came in 2009, when Erik participated in a 2½-month, intensive inpatient program at Texas Institute for Research and Rehabilitation in Houston, which specializes in brain injuries.
Christine won a long-fought battle with the VA to get him there. In 2008, Erik had progressed to a point where she and his therapists thought he would benefit from more intensive rehabilitation. She researched different centers, and asked the VA to send Erik to Houston.
They told her no.
Erik can’t go to a civilian facility, they said. He must use a VA polytrauma center.
Except the closest polytrauma center, in Palo Alto, Calif., turned Erik down, saying he wasn’t a candidate because the VA still didn’t think that kind of therapy would benefit him.
Erik was caught in a system that demanded he be treated by their doctors in one breath and then refused him that very treatment in the next. Christine was infuriated.
But not discouraged enough to back down.
Without telling anybody, she worked with Erik’s social worker to put together an application packet for the center in Texas, and the doctors there readily accepted him into the program. Christine went back to the flabbergasted VA with a contract.
It took them nearly six months with Christine pestering them to approve the funds — almost $1 million — but eventually Washington signed the contract and let Erik go.
The all-day program had unique therapies Erik hadn’t experienced, like music and breathing. The couple of months were hard on Erik, because he had to be checked into the medical facility as a patient, so he stayed overnight by himself. He was upset at the end of each day when Christine went back to the Fisher house, but he could tell he was improving and that was exciting.
Erik went home with much better cognitive skills.
One afternoon in Albuquerque, four playing cards lay face up on the table: jack of hearts, two of spades, four of hearts and six of diamonds.
Erik stared at them for a moment and then, with his mouth moving to the side first, he turned his head to face his therapist.
She smiled and praised him for adding up the numbers correctly, and Erik beamed back at her.
Later that day, Erik knew his speech therapist was coming, and he was going to work on his best man speech for Deven’s wedding.
Christine asked him whether he had decided what to say.
He started to tell her, then paused. He lifted his chin and he moved his lips in different shapes, trying to remember the right way for the sound he wanted to make.
Erik stopped, relaxed against the head rest and blew a kiss.
“No, no, no. Words. No kisses,” Christine chided him. “I love talking to you, to hear your voice. I miss it.”
Often their conversations reflected that of a mother and a small child, as she prodded him in an encouraging, and sometimes slightly exasperated, voice to try harder — to use his words.
Christine called him “my boy.”
“Mom! I’m a man,” he insisted.
Using a special computer that allowed him to select letters by scrolling through the alphabet with one finger, and by dictating to his speech therapist, Erik planned his speech.
“As I begin this wedding speech one question comes to mind, if I’m the best man why is Kayla marrying Deven? I guess because today, and today only Deven, I’m just an average man; you are the best man …
“… Kayla, you are loving and beautiful, and you stuck by Deven through his physical rehab after his injury. You are a kind and good hearted person who deserves a great husband. Deven good thing you snatched her up before she found one …
“…Deven, you are smart, loving, loyal and strong. It’s great to be your brother, and I love you …
“… I’m glad you guys found each other and fell in love …”
All of Erik’s therapists knew he wanted to be able to hold a woman’s hand. He flirted with girls he called “hotties” by blowing kisses and telling them they looked gorgeous.
Christine saw that he struggled with his younger brother’s upcoming wedding.
One day he looked at her and asked, “Mom, when am I going to get married?”
He wanted her to sign him up for the dating website Match.com.
Christine had to hold back tears. She didn’t want to be negative because for all she knew there might some wonderful woman out there who would accept her son as he is and not flinch at the responsibility of taking care of him. Someone who would love him just for his personality, her sweet boy.
“Let’s work on you first,” she told him. “You have time. Let’s get you stronger, so you can shake her hand when you introduce yourself and hold her hand.”
In the evening, Gordon came home from work and found Erik watching MTV in the living room.
“Hey, putz!” Gordon called and rubbed his son’s head.
Gordon carried the exhaustion of a man who didn’t like his job. He gave up his career in casino security so he could be in Albuquerque with his family and, after six months of unemployment, took a 60 percent pay cut for a job as a veteran’s coordinator for the New Mexican government. He loved working behind the scenes in security, but now his job was just a paycheck — and he’d be working for it long past retirement age.
Gordon pushed Erik’s wheelchair through the kitchen and out to the back porch. He put a tall glass of Seven and 7 in front of Erik with a straw and popped open a beer. They sat with 1970s rock ’n’ roll playing on the radio and watched the quails and roadrunners they called “Dick” and “Jane” run along the stucco fence.
Anneka had left earlier in the day with Mary to have a slumber party, staying up late for a Netflix and junk-food marathon. Anneka jumped at the chance to escape the house whenever she could.
On the porch, Christine warily eyed Gordon’s fourth beer, which he drank with a cigarette in hand. Ever since Deven got hit, Gordon had been drinking and smoking heavily. Christine was convinced he had secondary PTSD. Her husband of 30 years was angry all the time and his patience was nonexistent. Even Anneka recognized her dad fell apart after his second son was hurt in war.
For two years, Christine had been pleading with Gordon to go to a male caregiver retreat, telling him it wasn’t about the rock climbing or whatever activity was on the agenda, but rather the time with other fathers and husbands who were going through the same thing. Gordon refused.
Their marriage had devolved into a partnership of caring for their children. Christine tried to make time for him, she really tried.
She wanted her family to go to counseling together. But their issues were so unique, she wasn’t sure the right counselor was out there.
Christine pushed the phone up tight against her ear.
“Can I just …”
The third or fourth VA employee she had pleaded with that morning cut her off. Christine leaned back against the kitchen counter, face tight as she listened to an explanation she didn’t buy about why the VA, abruptly and without warning, had ripped six hours of weekly therapy away from Erik.
“I don’t understand why we …”
Cut off again.
And again and again.
Christine fumed after she hung up.
“It’s just ridiculous!” she said, throwing her hands in the air.
There the VA was again in its little black box, ignoring logic, she thought.
The Scheis endured consistent minor aggravations with the VA, like how the agency gave them one water bottle at a time for Erik’s wheelchair even though they tended to break and took weeks to replace. Christine suited up in her armor to battle the bureaucracy every couple of months.
She was practiced in all the roles the VA made her play. As Erik’s financial adviser, she accounted to the VA, a year in advance, for how she would spend literally every penny of Erik’s disability money.
Gordon furiously shook his head at what he saw as asinine requirements and inconsistency. The VA’s left hand never seemed to know what its right hand was doing, he thought. Like when they paid to build the therapy pool for Erik, then denied the maintenance expenses.
Then there were the baffling VA decisions that made them laugh. When Christine needed to weigh Erik, she was sent to the hospital’s scale onto which she could roll the wheelchair, but she had no idea how much the wheelchair alone weighed. She asked for help to lift Erik out of his chair one time — in what certainly would have been only a 10-minute task. The VA told her they didn’t have the resources for that. Instead, they bought Christine a $1,000 scale that hooks onto the tracking system.
Christine had refused to relent on the phone until the VA acceded to a meeting with all of Erik’s providers to discuss the change to his therapy schedule. Erik wasn’t done; he needed that therapy. At least his social worker was on her side.
Later, she and Erik settled down for lunch. Holding a cup of applesauce between her two palms, Christine ripped the lid off with her teeth because she couldn’t grip it with her crippled fingers. She absentmindedly fed Erik and blew forcefully through pursed lips.
“Sometimes a one-bedroom apartment looks awfully cozy,” she blurted. “No family. Just leave me alone.”
“Sorry. Sorry,” Erik said over his mom’s shoulder with his small voice.
Christine’s face fell.
“It’s not you. Mom just has hard days like everybody else.”
“Would I do that to you?” she said, leaning in close and smiling at her eldest son.
He returned a pained smile.
Erik didn’t want to be anyone’s burden. When Christine complained, even lightly, about a chore, Erik wished aloud he could help. He’d happily do his own laundry if he could.
Christine cooed that she knew that — that she was happy her job was to take care of her boy.
In 20 years, when she and Gordon are in their 70s, she knows she probably won’t be able to do it anymore — something they will address when the time comes.
But a fear hovers every time she rubs her aching hands or modifies yet another activity to accommodate her scleroderma — that the moment she can no longer take care of Erik will come barreling at her and Gordon long before old age forces the issue.
Christine is adamant that her children not take over for her. This is a choice that she made, not them. It’s her responsibility.
She fears Deven’s wife and Anneka’s eventual spouse will be angry and resentful if they must take on Erik. She doesn’t want their marriages to be handicapped the way hers is.
When the time comes, she’ll put Erik in a nursing home. She tries not to linger on that inevitability and consoles herself with the hope that there will be something better for Erik by the time that happens — that the VA or the Wounded Warrior Project or someone will have come up with a solution, like a new kind of home just for young veterans.
Deven bristles at even the discussion of one day putting Erik in home. No way will he let that happen. His brother deserves better.
Deven had warned his fiancee that when his parents couldn’t do it anymore, they would drop everything and go to Erik. No hesitation or discussion. They’d just go.
Christine hopes she can ward that off by pushing Deven to move on with his life now. She tells him his wife should be his priority, now and in the future — not Erik. Go to school, start a family, build something for yourself, she pleads with him.
Anneka pins her hopes for the future on Deven. She wants out of her parents’ house, and when Deven moves to Florida, she wants to go with him and maybe have a shot a normal life, where no classmates make fun of her for changing her grown brother’s diaper.
Deven is sympathetic, but he tells his little sister he has a lot to figure out about his life before they could talk about her moving in with him.
Christine doesn’t waste much energy trying to predict the future. She focuses on being thankful each night for what they had that day.
Tucking Erik into bed after saying their prayers, Christine rubbed calming oils on his skin to help him sleep.
Tomorrow is Monday, she told him. Hilda will be here at 6:40.