Going to war brings with it the very real possibility of dying. When my brother Robert left for Iraq in September 2006, our family feared that his commitment might demand what is often called the highest price. Before he left, I imagined what it might be like as the sister of a dead soldier to tell everyone that he had laid down his life in such a contentious struggle. I pictured the flag-draped coffin, the article in our local newspaper, the murmuring friends and neighbors filing through to praise the dead hero. Always a realist, I prepared myself for his death as the worst possible outcome. I failed to conceive of any scenario that could rival the bitter finality of his dying.

I soon discovered that giving one’s life can come in more than one form. For my brother, his life as he knew it was taken on January 14, 2007, in Baghdad, when an EFP—an explosively formed projectile device—detonated outside his Army Humvee, sending a shock wave through his brain, severely injuring him without leaving a mark on his body. Robert escaped death, but has paid a price almost as high. Today, he is back from war, 25 years old, brain-injured, and disabled. My brother accepted this risk when he signed his military contract in 2002 through the ROTC program at the University of Rhode Island. Although my family didn’t sign an agreement or contract, we have discovered that we are as bound to his commitment as he is himself. Before my brother’s injury, the phrase traumatic brain injury, or TBI, meant very little to my family. Now it defines our daily existence. The ongoing process of rehabilitation since his injury has tenaciously enmeshed each one of us, altering our plans, our family structure and interactions, our ideas about life and sacrifice, and most resolutely our belief that if he would only make it back home, everything would be okay.

My brother’s injury occurred in the early hours of the morning in Baghdad, as his platoon was finishing a 10-hour shift of route clearing. He was a mechanical engineer and a second lieutenant, in charge of 25 men. Their assignment was to find and dismantle or detonate IEDs (improvised explosive devices) and other explosives that litter the roadways in Iraq. His convoy was nearing an Iraqi checkpoint when his vehicle, the third in line, was targeted by an EFP. The explosion catapulted the vehicle into the side of a building. The force of it blew a hole in the side of the armored Humvee, sending a chunk of metal into the driver’s head, killing him almost instantly. My brother was in the passenger seat, and it was the force of the explosion rather than metal that penetrated his head.

After he was wounded, Robert’s brain began to swell and the pressure inside his skull skyrocketed. He was taken into surgery as quickly as possible, where a large part of the skull on the right side of his head was removed to allow his brain to expand unencumbered. The pressure continued to rise, and a second surgery to remove even more of the skull was necessary before he left Iraq. It was almost a week before he was stable enough to be moved to the Landstuhl Regional Medical Center in Germany. During this time, my family did little besides sit together and pace around the house, waiting for the phone to ring with an update on his condition. We didn’t fully grasp the severity of his injury. We weren’t told at the time that he was awarded his Purple Heart in the middle of the night after he was wounded, because doctors feared he wouldn’t live until the next day.

Once Robert was in Germany, the Army flew my father out to be with him. It was only then that we understood the gravity of the situation. As his body began to awaken, my brother was kept in an induced coma, allowing his brain to rest. When they finally tried to bring him out of it, he would not wake up.

I am one of five children spanning 14 years. Robert, the eldest, and I were lumped together for much of our childhood, being the closest in age to each other. Although he is 18 months older, I have always acted like the eldest. My mother says he didn’t talk until I did. I distinctly remember explaining to him how to pronounce “Hallelujah.” Because we were homeschooled, much of our schoolwork was done together. We did our English and history lessons as a pair, as well as all of our science projects—I dictated the steps of the scientific method while he scribbled ferociously into a notebook that would later prove indecipherable. We didn’t stay particularly close. He moved into his own sphere when he joined ROTC in college, while I studied philosophy and kept to myself. I could tell he relished being in the traditionally masculine world of the military, where he could perform and deliver, unlike at our university, where he struggled to get through his required courses. Occasionally, he would let me go out with him and his ROTC buddies. I would sit back with my pint of beer and listen to their rapid banter, chuckling where I thought it was appropriate, as they fired movie quotes at each other. I liked watching him laugh and gesticulate. Like our father, Robert would laugh until his eyes watered—with an exuberance that seemed a long time coming after the hesitations of his childhood.

My parents have organized their lives around their children, creating a force field that continually draws us home even as we have grown up. The night we learned of Robert’s injury, the rest of us were at our house in Kingston, Rhode Island, where we had spent most of our lives. We were sitting on the floor of the kitchen tie-dyeing T-shirts when the phone rang. A crackly voice told us he had been in an explosion and was going into surgery for head trauma. They would call again in two hours to let us know how it had gone. We gathered in our living room, stunned and unsure of what to do with ourselves. My father stood in the center of the room, slowly rocking back and forth on his feet. When he moved, the imprint of his shoes was chiseled into the carpet as clearly as if he had been standing on clay. He finally sat down, dragging an armchair tight into the circle of chairs and couches. It was not a time for sitting on the other side of the room. I knew my parents were praying, clinging to their lifelong faith, but I only waited for events to unfold and eventually sat at the kitchen table coloring fairies and dragons with my siblings to pass the hours. Every instant seemed like it could be the magical moment—surely now he is gone, or now all is well.

The phrase head trauma meant very little to me that night. I wondered to myself if my brother had perhaps lost an ear or an eye. The possibility of cognitive changes never crossed my mind. I was only vaguely aware of traumatic brain injury as the so-called “signature” wound of the Iraq war, something that is largely due to the increasing sophistication of the explosive devices used by the insurgency. I learned later that the Defense and Veterans Brain Injury Center, which operates out of Walter Reed Army Medical Center, had treated 1,803 cases of TBI stemming from the Afghanistan and Iraq conflicts as of November 2008, while cumulatively their sites had recorded 9,100 cases of this injury. I was completely unaware of the large advocacy and support networks, such as the Wounded Warrior Project, that exist to rally for the treatment of severely injured service men and women, the influx of whom our government has proven sadly unequipped to handle. I didn’t know that it is still an uphill battle for many families to receive the kind of care that this incredibly complex injury needs in order to maximize recovery. This was the world we were about to enter that night, although we couldn’t have been more ignorant of its existence.

As soon as my brother was moved to Bethesda Naval Hospital in Maryland, my parents began the arduous task of attending to him. I never saw a hint of hesitation in them, even through the long months of care, as everything else in their lives took a distant second place. They were unflinchingly proud of Robert, as they had been when he joined the Army, decided to volunteer for deployment, and ultimately left for Iraq. My parents saw his wartime role in crisp black and white. They were not angry, like I was. Any political context for his actions and what had happened to him collapsed into the overarching fact that he is their son and was in need.

The day my mother prepared to leave for Bethesda, she told us she might stay the whole week. She was sure we could mind each other (two of my brothers were still being homeschooled), the house, and our grandmother for that amount of time. It would be hardest on my nine-year-old brother, who had never been separated from both his parents at once. But we were all eager to rally and pitch in, snapping into an automatic mode that propelled us through our daily routines. My mother was gone for the better part of four months, my father for six months. They would rotate, depending on my father’s university work schedule, and were often not home for more than three days at a time. But even when they were home, my parents were present in Rhode Island only in body. Their minds and all their energies were concentrated on a single hospital bed hundreds of miles away.

I’m not sure when I realized that the shock wave that penetrated my brother’s brain continued across continents and seas, engulfing my parents, my siblings, and me. Our lives were transformed rapidly, and it was months before I explicitly acknowledged the extent of the change. I had graduated from college three weeks before my brother’s injury and was working at a restaurant while I plotted my next move. But without my parents at home, the bulk of the housework, cooking, homeschooling, and grandmother care fell on my shoulders, giving me the unusual opportunity at the age of 22 to experience the life of a middle-aged married woman with children. My head became filled with grocery lists, grade school lessons, the appointment calendar, a barrage of daily details that had nothing to do with my own life plans or preparations. I quit my job, and life narrowed to my siblings, my family’s needs, and trying to keep everyone afloat. On a rare night out with one of my friends, I explained that my siblings had asked me to be home by 10. I wasn’t sure which was more bizarre—the fact that I had readily assented to this curfew or the fact that I thought it was a fair compromise for being “allowed” to go out. Even as I told myself that I was on the moral high ground, resentment began to fester within me as the sacrifices, the hurt feelings, and the hardships began to pile up.

As my family’s reality continued to revolve around my brother, I began to realize that every family member of someone with TBI becomes enslaved by the condition of their loved one. But while the tedium of this sometimes threatened to overwhelm me with self-pity, the tautness of the real tragedy was continually re-framed and re-focused. Despite all of the changes to my life, my attention went again and again to my brother, who languished at the upheaval’s epicenter, suffering at a level that could not be compared to ours.

The first time I saw Robert, three weeks after his injury, he was still being kept in an induced coma. I flew down to Washington, D.C., with my sister Anna for the weekend. We were giddy and giggly in a bleary haze of extreme nervousness. When we asked what to expect, our father said that nothing could prepare us to see the devastation that was our brother. Outside of his room in the intensive care unit, we donned yellow gowns, masks, and gloves. We could see the end of his bed from the door. His feet were clad in gray socks and listing outward in extreme lassitude. We could already hear all the hospital noises, the beeps and whirs, the heavy whoosh of his ventilator. I wasn’t brave enough to walk right in and confront my brother, so I peeked around the corner with one eye. Recoiling, I whispered to my sister that I wasn’t sure if I could do this.

Robert was swollen and bloated; his skin was puffy and enamel white. He looked worse than dead and somehow a bit reptilian, more cadaver than creature. The violent rise and fall of his chest with each pull of the ventilator looked painful, as if the machine were assaulting him. His eyes were fluttering a bit. When they were open, his pupils sometimes rolled around, not entirely in synch with one another. The right side of his head where the skull had been removed had a cavernous dent, the skin sinking in because there was nothing to hold it up. Mucus had built up around his nostrils, his lips looked extraordinarily thick, and his face was damp. He looked strained, far from peace, and barely human.

Anna and I crept to each side of Robert’s bed. It took a tremendous effort to grasp his hand in mine, and even more to begin speaking. As we each held one of his cold, bloated hands and began talking to him in shaky voices, I found it hard to regulate the volume of my speech; it came out dreadfully squeaky. “It’s us,” we said over and over again. It was worse than talking to a corpse. I felt there was no way to reach him and that my words would only emphasize this chasm between where he was and where I was. “We never thought we would have a reason to come to Maryland,” my sister whispered. She seemed unsure of who to look at, me or our brother.

It was awkward, but as the wildness of the initial shock wore off, we gradually remembered some of the things we had decided to say on this first visit. A nurse lowered the level of his sedation, hoping that he would become more aware of us, and we chattered about how much we had wanted to come. Our sentences tumbled out rapidly, blurring together at their edges. “You did everything right, your men are safe,” we said repeatedly, like a mantra. “We’re so proud of you.” We told him to come home soon, because our other brother was already driving his car and had taken his leather jacket. His eyes wandered. In my distress, I wanted to lean down and shake him. He hovered below the surface of some great torpor, and I felt that if only I could break through its glassy layers, I could pull him out to be with us. It was all I could do to keep from yelling, “Robert, this way!” Yet despite my desperation, he remained remote, as if he were hearing the echoes of my voice in the wind but could not tell which direction to turn. His mouth began twitching, its corners turning down. A teardrop slowly came out of one eye. “He’s crying,” my mother croaked.

Today, two years into his injury, Robert lives in an apartment next door to our family home. My parents care for him and help him with daily tasks, managing his affairs, cooking his meals, cleaning his apartment, doing his laundry, cutting his fingernails, cajoling him to do what he needs to do, and cheering him up when it all gets to be too much. He has become their child all over again and their full-time job. His neurological signals remain “markedly abnormal,” and he goes to occupational and physical therapy three times a week to work on his limitations. He is still unable to use his left hand and arm very much, and it curls against his side like a fractured wing, the white, cold fingers curved into a lifeless ball. He sometimes stretches it out, displaying his hard-won ability to part the fingers and lift the arm above his head. But then it pulls back into its bent, wounded position and languishes there with an extraneous air, flopping about as he walks with his uneven and heavy gait.

The oddities of traumatic brain injury become more apparent to us every day. It is a cruel fate that allowed him to come so close to being normal, and yet miss it altogether. Outsiders are sometimes amazed by how well he functions. But we who live with him and care for him would find it exceedingly difficult to characterize him as anything resembling a typical 25-year-old man. Robert was certainly not a saint before his injury, as few men his age are. He could be angry, violent, indignant, ungrateful, and rude. Now that he is living with TBI, we have noticed that many of his less-desirable character traits, noticeable yet controlled before his injury, have been amplified or twisted into a puerile caricature of adult emotion. Even my parents acknowledge that their son has become an uncomfortable mix of a child and a man. He “lives on his own,” yet once pitched a temper tantrum because he needed to make a phone call and my father would not do it for him. He is often petulant and capricious, self-centered and unreasonable. One night he loves chicken Parmesan, the next night he insists he has hated it his whole life. If he is physically uncomfortable, he is crabby and will snap at whoever is near him. Sometimes when he is exhausted and overwhelmed after his day of therapy, he will sink into a teary sulk, rubbing his red eyes and sharply demanding food or something else that he needs. Even his voice enhances his juvenility, being a little squeakier and more slurred than it used to be.

My brother’s childlikeness can bring a degree of awkwardness into our interactions with him. His new demeanor is more often characterized by excessive giggliness than by anger. He will frequently prattle away with a wide-eyed seriousness and then collapse into silly laughter that is sweet and uninhibited but also a bit sad coming from a 25-year-old man. He finds it especially funny when he baffles us with some strange observation like “So you want to put on those pants and walk down that path?” When the response is a perplexed stare, Robert will gleefully chortle away at his wittiness. Although he fully knows who we are, my brother calls my sister “Albert Hanesworth” and addresses me as “Edward Hackinson.” He will laugh outrageously at our protests and never seems to tire of the joke, if indeed that’s what it is.

Sometimes Robert’s contributions to our conversations don’t quite make sense, yet often they are witty or even insightful. When Anna was discussing a poem she had talked about in class at the University of Rhode Island, she read it aloud and inquired what we thought it meant. My previously liberal-arts-phobic brother immediately responded, “The anonymity of strangers,” which upon a second reading, seemed to be the very thing the poem was talking about. In defiance of his previous distaste for research, our brother sometimes tells us of his “unquenchable thirst for the elixir of knowledge,” which often leaves him unable to sleep in the middle of the night until he has powered up his computer and researched some burning question, such as who Adonis was or why we sometimes get “brain freeze” when biting into something cold.

In a way, Robert is more endearing than before. Yet there are barriers that inhibit his desire and ability to interact with people outside his family who might sincerely enjoy his company. My brother’s language is sometimes slightly garbled, due to the diffuse nature of his brain injury. He once was trying to say, “Typical, typical,” but instead said, “Pitacal, pitacal,” and continued on without noticing his error. He often recounts stories from his therapy sessions or explains how he is feeling with an undeniable element of theatricality, brandishing his arms and using archaic or overblown language. He uses words like “whither,” “thus,” and “thence,” and consistently says “nay” instead of “no.” He also takes delight in the kind of pranks a 10-year-old might pull, such as bopping someone on the head as they come around a corner. He can be extremely rude when out in public, completely ignoring an old friend or a formerly familiar passerby who is asking about his health.

It can be difficult to console my brother during the times he explicitly or tacitly laments his lost abilities. He can no longer play baseball or basketball with his friends, and this makes it hard for him to participate in the sports nights they used to enjoy together. He cannot go shooting with them or play paintball. He cannot play the bass for hours at a time anymore. Because of his medications and the risk of seizure associated with the crainoplasty that restored the missing part of his skull, he cannot drink alcohol. An ardent sports fan, who spent countless nights watching football and drinking beer with his friends, he now rarely goes out with them to a bar or sports parties. Robert has neglected these relationships and, in turn, has been neglected by many of his friends. It is difficult for them to know how to respond to the way he is now. My brother does have one friend who takes the bus down from Providence on Thursday nights to play video games with him. They sit on the couch in his apartment, eating Skittles and laughing hysterically at their memories of the old days. My brother looks forward to these evenings with unabashed joy. We are extraordinarily grateful for the dedication that compels this friend to return again and again.

As my brother recovered in Bethesda and later in Tampa, he knew he was in rehab with the specific purpose of getting stronger and becoming well; he was a recuperating soldier. When he returned home, many people assumed it meant that he had been patched up and put back together again. They often greeted him with a pat on the back, saying, “So do you feel like yourself again?” My brother would nod with the wide-eyed and complaisant face he sometimes assumes when talking to people outside the family and mumble something like, “Yeah, yeah.” At such moments I would try to remind him that he had never stopped being himself. The last thing I want him to think is that his injury has taken away whatever made him himself, especially since most of its effects will not go away for as long as he lives.

But there is more kindness than logic in what I tell him. The parts of his personality and his life that he has lost have been carved out with a heavy hand. It is not hard to think that the Robert we knew is gone. My brother is a paradox. We insist that he has survived, that his essential self has been retained. We have not mourned the loss of someone we love. I cannot compare what he or my family has been through to the anguish caused by death in war. We are unquestioningly happy that he is indeed still here, but something—some part of him—clearly came to an end that morning in Baghdad.

Robert still loves to throw out snatches of movie lines. He loves guns and dogs and watching sports just like he used to. But he is no longer the person who, for 23 years, I thought of as “my brother.” His quirky mind, his narrow focus, his slurred speech, and his physical difficulties all suggest another person to me. My brother is alive, but transformed to such a degree that I separate who he is now from the person I once knew as if they were entirely different individuals. This is subconsciously reflected in the way we address him. Before his injury, he went by “Rob.” My family now often calls him “Bob,” as if he is someone other than the “Rob” we knew for so many years.

It may be possible that receiving life instead of death can become its own kind of torment. Robert must negotiate his “new” life in the face of bitter and permanent alteration. It is incredibly sad when I catch an occasional glimpse of his frustration and bewilderment at his new dependency. His moments of seeming oblivion are interlaced with times of an acute sense of loss and extreme self-consciousness—about his appearance, his disabilities, his difficulties in following rapid conversations. It is hard to know how to respond when he refuses to eat out at a restaurant with us, because it is too embarrassing to be seen having someone help him with his food and implements.

My brother was not characterized by timidity or reluctance during his brief military career. Robert volunteered to go to Iraq and was placed with a new unit that was just deploying. His work there of removing roadside bombs and IEDs probably saved hundreds of lives in a country that has seen too much sadness already. His men said he was like a father to them, though many of them were older than he. They said he did everything right. They said he was the only person they wanted to trust with their lives. For Robert, an identity defined by disability must seem a poor trade, especially as he had so recently found his way to flourish.

Robert still occasionally insists that all he wants to do is re-join the military and be an engineer. He took a vocational test as part of his rehabilitative therapy and scored highest in these two areas, a cruel jab at his inability to now follow his “calling.” His physical and cognitive limitations have trapped him in a sphere of himself that doesn’t contain the parts that he always liked the most about himself. What do you do with yourself when all you ever wanted to do is resolutely out of your reach? Since my brother’s injury, I have often struggled with the despair that this line of thinking brings. In weariness, I succumb to believing that this harsh fate will rival any death stroke. My brother may always remain a hero for what he has been through. But a hero who is unable to open a jar or spread the cream cheese on his own bagel may grow weary and contemptuous of life very quickly.

Every time I see my brother’s curved, flaccid fingers or run my own able fingers along the baby skin of the huge scars that cross his head, I wish fervently that this had never happened. To serve his country, my brother sacrificed a promising future as a leader in the military. I fear that all he is becoming instead is a guy scratching at himself as he sits on the sofa with his computer watching Internet porn, living on his military disability pay and Social Security.

But this is not the possibility that my family must choose to dwell on as we vacillate each day between despair and hope. Not every disabled person becomes tired of life. There is always dignity, pleasure, and meaning to be found in existing. Science and medical research continually hold the promise of alleviating Robert’s symptoms. With the therapies that he is undergoing, he has a fighting chance to regain a little more function. We must never forget how much we have already received. My brother has been given back to us multiple times: from death, from a vegetative state, and from an enfeebled condition. Surely this can be seen as an encouraging trend.

Robert escaped death by two feet, living while the driver sitting next to him, a young man from Washington named James, died. Before each mission, the two of them would clasp arms and tell each other, “No fear on earth.” I understand that what these two soldiers were saying to each other was that acting as if you are unafraid is how to function in a volatile and perilous world. It is this grim determination that repels the terror and discouragement that unfairness and absurdity can engender.

I no longer have the illusion that soon my family will be able to clap my brother on the back and say, “Phew, that’s over. We made it through.” Robert is never going to be cured. But the possibility of our continual enslavement—my brother’s to his injury, my parents’ to their son, and mine to my family—is something I do not want for us. This tragedy may not disappear or even lessen much in severity, but the virtue of being alive and not dead is that we can respond actively and creatively to even this situation. So while my brother treks across our parents’ yard every morning, following the dusty path that his feet have worn in the grass, to sit in the kitchen and wait for someone to make his oatmeal and coffee before resuming his position on the sloping, brown couch in his apartment, I have booked a plane ticket to New Zealand and am preparing to fulfill my post-graduation plans, which will be two years overdue by the time I embark.

The persistence that it takes to adapt to change is a daily concatenation of choices. Although I choose to be hopeful for both myself and my brother, hope can never assuage the heartbreak for what he and my family have gone through. But I am resolved to believe that just as my brother set in motion the conditions for enslavement, I can set in motion those for freedom. Maybe now he will follow my voice, as he was unable to do as I stood over his bloated and tremulous body many months ago in the ICU. It is telling him that enduring change means bearing sadness, anger, regret, and pain. But if I can find a way to spite the despair, so can he.