There is a faith in loving fiercely
the one who is rightfully yours,
especially if you have
waited years and especially
if part of you never believed
you could deserve this
loved and beckoning hand
held out to you this way.
— David Whyte, “The Truelove”
The nurse left Ken’s room. I watched her out in the ICU’s central area for a few minutes, hoping she wouldn’t be back for a while. I didn’t want her to see what I was about to do.
My husband was finally asleep, his delirious thrashing temporarily eased, thanks to morphine and exhaustion. Someone had neatly stitched the Y-shaped cut above his left eyebrow. His blackened eyes were mostly swollen shut, and the bridge of his nose was broken. A heavy plastic cervical collar pushed his chin up and immobilized his neck. Now that aspiration pneumonia threatened his breathing, small tubes in his nose, or sometimes an oxygen mask, whooshed air into his lungs. The respirator’s unwavering cadence meshed with the longer rhythm of the plastic cuffs around his calves, inflating and deflating to keep the blood circulating through his supine body and prevent clots. A horrendous bruise ran from the inside of his left elbow, down that arm and ribs and hip, all the way to his knee, where a wound the size of a quarter on his left knee dug almost to the bone. Brilliant blue tape secured a temporary cast around his right hand and lower arm, an eye-catching spot in the flat light of the pale room.
Then there was the biggest shock of all: His doctor had mentioned a brain injury, possibly a serious one, although we wouldn’t know for sure until Ken was more alert.
I turned away from Ken to pull the camera from my satchel on the floor beneath one of the room’s windows. As I stood up, the wide-open Arizona sky, blue as the tape on Ken’s arm, filled my vision and helped me feel a little less claustrophobic in the tiny space. Here it was, the first day of 2004, and instead of welcoming the new year at home, we were in this room filled with beeping monitors, a few small chairs, and the bed with side rails, where my husband lay, covered by nothing more than a hospital gown draped over him and a light blanket, which he frequently kicked off.
He was quiet now, but yesterday he had become hysterical several times, once screaming, “Can’t do! Can’t do!” and thrashing in terror.
“Can’t do what?” the nurse and I asked, stroking his arms and face to soothe him.
“Can’t do!” he screamed again, hoarse. “Can’t do anything!”
Was that how helpless he felt when he realized the accident was about to happen?
Later, he yelled over and over what sounded like, “D-O-A! D-O-A!”
Did he mean “dead on arrival?” The nurse and I did our best to comfort him as we wondered if he was reliving the collision in his delirium.
Now, with Ken asleep, I checked once more on the nurse’s whereabouts and fiddled with the camera’s controls. Then I stood back from the bed and quickly snapped four shots of Ken, ashamed of intruding on him while he was so defenseless but determined to have this record. I couldn’t let him ride again, and these photos would be my ammunition.
* * *
Ken might not have started riding motorcycles again if I hadn’t made an off-hand comment when we were first dating about three years earlier. He was 53 at the time, and despite his lifelong passion for riding, he had quit more than a decade before. The streets of Tucson were getting too busy and too dangerous for motorcyclists, he said. I blurted that I was a “repressed biker chick.” How stupid of me. It was a joke, a reference to those sexy Harley women, tan in their spaghetti-strap tops, tight jeans, and boots, their long hair blowing free. It was the seductive illusion of the windblown freedom that appealed to me far more than riding itself. Were I ever to ride, I’d never go without a helmet and other protective gear.
But my comment was all the encouragement Ken needed to start riding again. He signed up for a motorcycle safety course to refresh his skills, bought a good used BMW touring bike—a beautiful blue machine weighing more than 500 pounds — and bought helmets, boots, gloves, and jackets first for himself, then for me. He began riding back and forth to work and elsewhere, once again exulting in his old love, which offered both freedom and the frequent opportunity to test and hone his skills
As intrigued as I was by riding, I was also reluctant to do it. Every week, the newspaper reported stories about motorcyclists killed and injured on Tucson streets, often because drivers didn’t see them. Ken mentioned that nationwide studies showed the leading cause of accidents for bikers was inattentive drivers turning left in front of them.
“I’m very careful, you know that,” Ken said, “and I rode for more than twenty years with no serious accidents.”
I had to admit both of those things were true.
“You have to try it,” he said. “You’ll enjoy it. You’re not trapped in a cage, like when you’re in a car.”
I loved him, and he loved riding. So I allowed his enthusiasm to persuade me. I worked up my courage and began going on rides, seated behind him on the comfortable rear seat of the Beemer. On Saturday or Sunday mornings, we’d head out to brunch in one of the little towns outside Tucson or sometimes just go for a spin on a gorgeous desert day. Even though I would much have preferred the car—where we didn’t need the heavy full-face helmets, bulky jackets, boots, gloves, and earplugs—I enjoyed swooping through curves, inhaling the fragrance of pines drifting underneath my face shield, and feeling the air cool as we left the desert floor to head up into the mountains. Ken was right about the feeling of freedom. But to enjoy it, I had to block out visions of the two of us lying broken and bleeding on the pavement.
* * *
Ken’s first accident, which we later named the “deer wreck,” happened on June 25, 2002, a few months after he proposed and exactly one month after I moved in with him. He was riding home from work on the eastern outskirts of Tucson at a time later than usual on a road he didn’t normally take. A deer standing on the other side of the road bounded out in front of a Ford Explorer, which flung the unfortunate doe directly in front of Ken’s Suzuki as he was traveling at about 50 mph. While the front wheel halted immediately on impact, nothing else did. The back end of the bike flew up, Ken was flung into the air, and he tumbled and bounced for 200 feet down the asphalt, the 400-pound Suzuki sliding dangerously right behind him. Later, the off-duty Border Patrol agent driving behind said Ken clung to the handlebars as his feet flew straight up and over.
At home about two miles away, I was angry. Ken knew we had to get to the computer store before it closed, and he was late. My Mac had finally quit working that day, and I needed a new one pronto to meet all my writing commitments. The phone rang, and I almost didn’t answer it because of the unfamiliar name on the caller ID.
It was Ken.
“Hi, Sweetie,” he said. Something was wrong with his voice, but I didn’t know what.
Upset with him, I was about to ask, “Where are you? You know we have to...,” but Ken spoke first.
“I borrowed someone’s phone. I just had an accident, and I wanted to tell you before some stranger called.”
“What?” I was stunned. “How are you? Where are you?”
“Just over on Freeman Road, close to Broadway.” He coughed.
“Did someone call the ambulance?”
“Yeah. The guy who’s phone I’m using. Can you come?”
I arrived just as the paramedics did.
Ken looked so small and crumpled on the ground, his face smeared with dirt, his eyes alight with growing panic even as he cracked dumb jokes that everyone ignored. The paramedics drove the ambulance slowly so as not to cause Ken more pain. I followed in my car, glued to its rear bumper.
Ken broke about a dozen ribs, some of which pierced and partially collapsed his lungs; he also cracked his pelvis. Later, we would find that his shoulder blade had also been fractured. Then, in the ER, he died. Or at least it appeared that way to me.
When the ER personnel turned Ken on his side to take him off the backboard, he screamed in agony and fell unconscious. My disbelieving eyes flicked between his pain-contorted face and the monitor that showed his heart rate plummeting to 30, and then to nothing. To a blank, empty spot. The doctors yelled, “Ken! Ken!” into his ear and shook him. I stood only a few feet away, hands over my mouth, frozen in the knowledge that my fiancé had died in front of my eyes. But Ken’s heart rallied, and the docs said he had only “bradied” — suffered bradycardia, or abnormally low heart rate—from the agonizing pain of all the broken ribs.
Already shivering in the cold ER, I was by then shaking nearly uncontrollably. A nurse came over and put her arm around my shoulders.
“He’s going to be fine,” she said. “We’ll take good care of him.”
They did, and he was. He was home a week later, using a wheelchair and then crutches while his pelvis healed and sleeping in a recliner because all the broken ribs would not allow him to lie flat in bed. I was happy to care for him.
Since my divorce in 1977, there had rarely been anyone else for whom I could care in any meaningful way. I had yearned for someone to love me and also longed to love someone back. With Ken recovering at home for six weeks, I could care for him and show my love in the most basic ways — helping him to shower or be comfortable in his recliner where he spent most of his time, taking his food to him on a tray, sitting and chatting in the middle of the day, taking him on jaunts to the mall just so he could get out of the house (and where he often rolled his wheelchair so fast I could hardly keep up — “I feel the need for speed,” he joked). In this temporarily expanded role, I had a sweet and important purpose. It felt good, and Ken, who had been a bit of a loner for a long time, learned to let down some of his defenses. We grew closer.
Soon, Ken went back to work, and our normal life went on. He even continued to ride, something I railed and argued against. I was horrified that he would even consider it.
“You could have died,” I said, extending my best argument. “And in the ER, I thought you had.” (And how could you even think of doing that to me again? I thought but did not say.)
He was sorry for that, he said, but he would not permit anyone to make him feel guilty about riding, and he wouldn’t stand for any fear-based strategies aimed at getting him to quit.
He was adamant. I chose to not argue any further and even went riding with him again before too long.
* * *
Ken’s second accident, which we would come to call the “brain wreck,” happened on December 29, 2003, the nine “monthiversary” of our wedding. We planned to cook a special dinner to celebrate. Around noon, Ken decided to run some errands on his new Ducati M900S, a model called the “Monster,” the third bike that now shared the garage with our two cars. The lovely day almost tempted me to go along, but I had a freelance writing assignment to complete.
“I’ll be back in a couple of hours,” he said as he pulled his helmet on. I kissed him beneath the upturned face shield.
Around 3:30, as I sat working in our home office, little prickles of apprehension started shuffling through my awareness. Ken should have been home by now, or called—after the deer wreck, he always called to let me know if his plans had changed or if he’d be late. When there was still no Ken and no word at 6:00, I phoned the Tucson Police Department.
“Were there any motorcycle accidents this afternoon?” I asked the dispatcher, struggling to keep my voice steady. “My husband has been gone for hours now, and he would have called if he decided to stay out this long.”
“I’m sorry,” she replied in a practiced but kind voice. “We don’t have that kind of information so soon. You should call the local hospitals.”
She gave me the phone numbers. First on the list was University (of Arizona) Medical Center. A woman’s voice there told me, yes, Ken had been brought in by ambulance hours before and was now in ICU with broken bones. She couldn’t explain why no one had notified me, and she would provide no other information.
“You’ll have to come down and talk with his doctors,” she said.
A squeezing pain began to stomp around near my left collarbone, and my heart felt as if it would clamber up my throat.
“Can’t you tell me anything? What bones are broken?”
“No, I’m sorry. I can’t.” She sounded as though she wanted to tell me but wasn’t allowed to. “You’ll have to come here.”
I started shaking but squashed my panic into a little container somewhere inside me. Falling apart could come later. By now nearly in shock, I couldn’t drive myself all the way across Tucson. I called Gary, Ken’s best friend, for a ride to UMC.
At the hospital, the doctor ushered us into Ken’s ICU room. My heart crumbled into pieces at the sight of my broken husband. He had a ventilator tube down his throat, and he was struggling in delirium as though trying to flee some horror. Steadying myself against the bed rail, I lightly stroked his forehead and said, “Hi, Sweetheart. I’m here, and Gary is, too.”
Ken relaxed slightly and opened his swollen right eye as far as he could, only a slit on the very outside corner. His brown eyeball skittered there, unable to focus or settle down. He seemed to know me. I hoped he did.
The sight of my husband in that bed, and knowing he had almost died again, summoned in me a resolve so deep it must have sprung from the center of the earth. I was now every mother bear who had ever raged to protect a vulnerable cub. I was fierce, my resolve steel itself. I would let nothing hurt him again.
So three days later, I took those covert photos of my wrecked, brain-damaged husband since it was likely he wouldn’t remember any of this. He had to see what motorcycle riding had done to him. He couldn’t take another accident. And neither could I.
* * *
The three-pound human brain is probably the most wondrous mechanism in the universe. It’s also one of the most delicate, basically a lump of gelatin floating within the skull like the yolk inside an egg. Even though a human head propelled against a sheet of steel comes to an immediate stop, the brain continues its trajectory, smacking against the skull’s hard, rough interior and then rebounding in a motion called coup contrecoup, damaging the fragile tissue and often killing uncountable neurons. If a person survives such an impact, it is with certain brain damage, ranging from a light concussion to a coma and even eventual death. In between those poles, many problems can arise, such as memory loss, impaired mental function, personality changes, and the inability to work or handle the tasks of daily living.
Ken joined the tribe of the brain-injured when a white sedan carelessly turned left in front of his Ducati that day. Having the right of way but unable to avoid the vehicle, he smashed into the passenger side near the back wheel. The sedan continued into the Super K-Mart parking lot as if nothing had happened and disappeared (it was never identified and the driver never found). Witnesses came immediately to Ken’s aid, and an ambulance took him to University Medical Center.
After seeing the condition of Ken’s face and, later, the blood-smeared face shield of his helmet, I was haunted by a mental image: helmet striking steel, face smashing into helmet, brain slamming into skull. His brain injury didn’t show up on imaging scans — as is often the case — so there was nothing to do but wait and see how the damage revealed itself. However, it was likely that most of the damage was in the frontal lobes, which are associated with memory, impulse control, judgment, language, sexual behavior, problem solving, motor function, and planning and executing behavior.
In the first days after the accident, as his delirium and terror lessened, much of Ken’s speech consisted of parroting words in a sing-song voice. Aspiration pneumonia made him cough, which frustrated him.
“Bummer,” I said, stroking his forehead and smiling directly into his right eye, now a little more open, so he could see I was joking, trying to keep things light.
“Bummer, bummer, bummer,” he sing-songed back, much as a toddler would.
Next, he began repeating nonsense phrases. The first was, “Happiness is, happiness is,” in a gentle rhythm. I added, “Happiness is a warm puppy,” which he chanted for a while and gradually transformed, first to “Happiness is a warm country,” then to “Happiness is a warm dick.” This he said while fingering his Foley-cathetered penis, a common behavior in male head-trauma patients, the nurses said.
As Ken’s speech expanded, I grew more alarmed.
“I have to rewire your circuitry so I can manage you better,” he told me in all sincerity. After I showed him how to drum on a plastic basin, to see if he could hold a rhythm, he declared his staid, 77-year-old parents were members of a steel drum band — no, wait! A plastic drum band! He insisted he had to get up and care for his patients (he’s a computer programmer) while Scott, our chiropractor, repaired his Ducati. He insisted it sat in our garage waiting to be ridden again, unable to understand it had been totaled and was in police impound as evidence of the hit-and-run accident in which he was the victim. He talked about imaginary people in the room with us. “They’re right over there,” he told me, exasperated I couldn’t see them but still smiling vacantly as he usually did now. During his first night in rehab, when he couldn’t even sit up without help, he somehow climbed over the bed rail, wandered down the hall and fell, hitting his head, fortunately without further injury. The nurse who called me around 1 a.m. said he kept repeating, “I have to find the motion. My wife and I have to find the motion.” He didn’t know where he was or what was happening. Even worse, he didn’t know that he didn’t know — a very bad sign. He was transferred to a Vail bed, a canopied hospital bed surrounded by sides of nylon netting supported on a sturdy, padded metal frame. It can be zipped shut from the outside, so the patient cannot exit without help but has complete freedom of movement in the bed. The nurse said it was an excellent alternative to restraints.
Prior to this accident, Ken was one of the most determined people I knew. If he was able, he would push himself as hard as possible to recover as much as possible. The question was, how much recovery would his damaged brain allow? Would he come back all the way, or would he be unable to breach some boundary that would leave him a bewildered, diminished version of himself?
I had to face disturbing possibilities. Perhaps Ken wouldn’t remember me or his kids, Phil and Kellie, or what he had for breakfast. He might remain unable to work or drive or even dress himself. With his impulse control disrupted, he might always gobble his food like a starving toddler, as he did now, leaving me terrified he would choke. And although present physically, he might never again be present mentally or emotionally in the vibrant way he had been before. If that occurred, what would happen to us? With no family nearby, I was his sole caregiver. I could end up our sole means of financial support. How would I cope?
* * *
The morning after the accident, I found myself literally walking in circles in the kitchen, pantry to stove to sink to pantry, and around again. After a near-sleepless night filled with terror and frantic calls to family and friends around the country, I had to eat breakfast before leaving for the hospital. My body required some sustenance to hold itself together so the little tremors fluttering all through me would not shake me apart. What did I want for breakfast? Toast? Eggs? Cereal and yogurt? I simply was incapable of choosing one over the other. All my concentration was focused on Ken: The invisible tether holding us together across the miles required my constant attention, lest he float loose and away, deserting me as he disappeared into a far corner of the sky. I called Marcia, our across-the-street neighbor and friend, who came over immediately and scrambled eggs, made toast, and offered support — whatever I needed, she said. Grateful, I ate what little my knotted stomach would accept.
For the next days and weeks, the unrelenting stress and uncertainty kept my adrenaline pumping, leaving me hyper-alert, as though a loud buzzer was always sounding throughout my body, as if I’d mainlined gallons of espresso. I slept raggedly for only a few hours each night, the phone near my pillow, ready to answer immediately if the hospital called. Each night before turning out the bedside light and each morning as soon as I awoke, I called the nurses’ station for an update on Ken’s condition. His nurses were unfailingly kind.
The pain that had begun knotting my chest when I first knew my husband was in the ICU had never abated. I did my best to ignore it. I’d had stress-induced heart palpitations — premature atrial contractions — before, so I knew it probably wasn’t a heart attack. Besides, if I were sick, who would take care of Ken? Four days after the accident, the pain in my chest, grinding deep like a steel-toed boot, kept me slightly hunched, unable to stand up straight. Marcia made me promise to see the hospital’s social worker — I had no idea that social workers were available to patients’ families — and to get myself checked out.
So that afternoon, I kissed Ken on the forehead and said I’d be back soon, praying that was true. The nurses had told me he grew agitated when he couldn’t see me nearby; he couldn’t remember I’d just been there and had no idea I could return.
“Bye,” he said, cheerful and distant-eyed. “Come back soon!”
I left Ken’s room and found the hospital social worker to explain my plight. Gently and carefully, he listened and then escorted me to the ER on the first floor. A team of nurses and a cardiologist—wonderfully, all women—scooped me up into a nest of comfort while they efficiently ran tests. They empathized with me, an ailing wife with a brain-injured husband upstairs in critical care. For the first time since learning of the accident, I felt protected and safe. A dose of something delivered a few hours of the best sleep I’d had in days. The pain was not a heart attack, said the doctor, only premature atrial contractions resulting from severe anxiety, as I’d thought. She prescribed a beta blocker, an anti-anxiety drug, and a sleeping pill. When, in later days, the prescribed drugs did not relieve the pain or help me sleep well, I accepted the situation and let adrenaline, not sleep, fuel me.
The day after my ER visit, our friends Bill and Wanda arrived to stay with me. I could not have asked for better or more loving care: For the five days of their visit, they drove me back and forth to the hospital, to the police department, to check out rehabilitation centers for Ken—important activities that were far beyond my capabilities then. Wanda held me when I sobbed and one night even put me to bed when I finally fell apart. Other friends brought over meals and soup or invited me for dinner, but I was unable to eat much. Working was out of the question; fortunately, my editors understood when I begged off my few outstanding assignments.
Despite my exhaustion from sleeping only raggedly and waking most days before dawn, I could barely sit still long enough to read the paper over breakfast, my habit of decades. As with the food I could not eat, unending tension kept me from taking in the words on the page, too; they seemed to merely glance off my corneas. Always I felt compelled to do something. I ping-ponged among necessary tasks—talking with insurance agents, doing our finances (petrified I’d miss something because Ken had always done them), handling the paperwork for Ken’s disability payments, emailing or calling family and friends with updates — and even then I could not stop, so I swept the floors or straightened up the house or scribbled in my journal and then scribbled some more.
In late morning, it was time to visit Ken. Hours later, after he ate dinner, I returned home and collapsed with weariness on the couch every night, surprised and grateful I’d been able to drive safely home.
Terrified by an ever-present fear that some other catastrophe would befall Ken while I was away from him, I felt calmer only in his presence, but calm only relative to the buzzing panic that never went away. Later a counselor told me I was probably suffering from secondary traumatic stress.
“That’s a condition common among caregivers of those who have suffered severe trauma,” she explained as I slumped in a chair in her small office. “It’s nothing to blame yourself for. It’s a natural response to emotionally overwhelming events.”
* * *
On that day when my husband came close to dying and his brain was violently altered, I didn’t know the National Institutes of Health considers traumatic brain injury to be “a disorder of major public health significance.” Two million Americans sustain a TBI each year, leaving thousands with permanent disabilities. But in the weeks after December 29, as Ken was first in the hospital and then in rehab, I learned how unique a brain injury is among all the injuries a human being can sustain. Along with physical functions, the brain controls awareness, personality, temperament, intelligence, and cognitive processes like memory — all those things that commingle to form a “self.” While our essential self does not reside in the brain, the brain is the part of us that animates it. A traumatic brain injury can kidnap the dear self of someone you love, dragging him far away as a riptide does a swimmer, sometimes beyond rescue, even though in physical reality he is holding your hand or smiling at you across the dinner table. I wanted more than anything to look inside Ken’s brain, to see what the scanning machines could not, to find his lost self among the blasted neurons and bring him home. Instead, haunted by our present reality and murky visions of a shattered future, all I could do was wait and hope.
This accident was so different from the deer wreck; then, Ken’s injuries had been only broken bones. But now, having suffered a moderate to severe TBI, he was defenseless and utterly dependent. Worse, he didn’t know it. That white sedan had crashed into our lives like a tornado, and now my resolve that no further harm come to Ken was unyielding, rooted in bedrock and bone. Through it coursed a sweeping tenderness for my lost husband, like nothing I’d ever felt before.
While some brain-injury patients become angry or violent, Ken was almost always happy, in a distant sort of way, a sweetly goofy little boy in a man’s body. His therapists — occupational, physical, and speech—enjoyed him because of his cheerfulness and determination. Yet, although physically located in the room, he was not present; he existed in some inward place, unable at least for now to transcend the damage to his frontal lobes. He spoke animatedly but never really engaged with anyone, aiming his face at people as his gaze floated over their shoulders. He had no concept of time passing and no ability to anticipate the future. Without the normal mental anchors, he lived in the moment and simply reacted to events as they happened.
The staff and I frequently reminded him he had been in a serious accident and was now in a hospital, but he forgot. He knew I was his wife, or at least a familiar, comforting presence, but when he started calling me “Boo” — which he had never done before — I knew he had forgotten my name. So Kim, his speech therapist, hung signs in his room as memory aids: “I was in a motorcycle vs. car accident on December 29” and “My wife’s name is Barbara.” She also started a “memory book” for him, to which I added photos of our wedding, his kids, our house, and our cat, along with affirmations proclaiming good health and normal life. Ken recognized every acquaintance who came to visit and jabbered at them in weird and oddly chatty conversations (common with TBI), but minutes after their departure he had no recollection of the visit.
Sometimes, though, bewilderment and fear clouded his eyes. He seemed haunted by a sense that something terrible had happened to him, but in his impoverished mental state, understanding recent events was like catching the shadow of a wind-tossed feather. Several times, he cried.
“I’m so lost,” he wailed, his face twisted in misery. “What’s happening to me?”
I held his hand or stroked his hair and reminded him, again, that he had been injured but was getting better. He grew calm, a frightened toddler soothed after a bad dream.
One day, we had just returned from the rehab facility’s gym, where he practiced tasks ordered by his physical therapist — walking on thick foam mats and around cones on the floor to help restore his balance, standing between parallel bars and doing leg exercises to strengthen weakened muscles, or using a beach ball to play catch with me or the therapist to improve coordination. After this, he usually needed to rest, so we had come back to his room until his next therapy session.
“Are you going to leave me?” he asked out of the blue, his voice aching with sadness. “I’m not the same man I was. And I don’t know if I ever will be.”
Commanding my tears not to fall, I looked down at my desolate husband, wearing rumpled pajamas and strapped into a wheelchair with a wide Velcro belt, the cervical collar still around his neck to protect a broken bone at the base of his skull, a post-surgical cast on his broken right hand. I hugged him and smiled.
“You’re stuck with me, kid. It took me all those years to find you, and there’s no way I’m leaving now.”
He didn’t smile back or banter as he once would have. Instead, he struggled inwardly with something that eluded him. Distress at this confusion twitched across his face. So I bent down and looked him right in the eye.
“I love you, Ken. I’m not leaving.”
His face settled back into a blank calmness and his vision drifted past me, his current dilemma resolved and the memory of it quickly forgotten. He wheeled himself across the vinyl floor, and I helped him get into the Vail bed so he could nap.
My sweet husband. What would happen to him, and to us? Would he remain the same man I married or would the brain injury cause a drastic personality change? What if he decided he didn’t love me any more? Could he eventually go back to work as a computer programmer, or to any job? His was by far the major income in our household.
Further complicating my thoughts and tugging at my heart was something he’d told me several times long before the accident: he would not want to live if disabled. Ken always pushed himself hard, and he hated being subpar even from a rare cold. What if he could not adjust to his new, post-accident self or make the accommodations necessary to adapt to his new brain-injured reality?
* * *
From the beginning, I helped with Ken’s care as much as possible. I felt better being useful, and the nurses appreciated the extra hands. In ICU, when he was not able to get out of bed, I bathed him with warm, soapy water and a cloth, and talked with him and soothed him. Once he had been moved into less-critical care, he wasn’t allowed to walk unaided—the brain injury had seriously affected his balance — so I helped my wobbly husband the few steps to the bathroom and stayed as the nurses ordered. The first time he sat on the toilet to pee, I stood a few feet in front of him, ready to steady him if he began to tilt, but he pulled me close and bent his head to my belly to steady himself.
Looking down upon his balding head, I combed my fingers through his gray hair and held back the tears that clouded my eyes.
When he entered a rehabilitation center ten days post-accident, I spent every afternoon and evening there. We talked as he lay in the Vail bed, which was allowed to be unzipped as long as he had company. I read aloud to him, or read silently while he napped. We went together to his physical, speech, and occupational therapy sessions. I cheered him on, and sometimes joined in to help. One day in the rehab gym, he held me close as we slowly moved a few steps to a tune he hummed. When I helped him shower, he sighed with pleasure, and we laughed when my clothes got sprayed. When he was too tired to push himself in his wheelchair, I took over, taking him outside to the courtyard for some sun or back to his room from the gym after therapy.
In his first few weeks in rehab, Ken was assigned to “swallow group” for meals. This was a section of the dining hall set aside for patients in danger of choking on their food. With Ken’s impulse control now haywire, he bolted big bites of food, hardly stopping long enough to chew before gulping another bite. I became a nag, perhaps too protective but terrified of further harm. I reminded him again and again to slow down, be careful. Stubbornly, he refused, brushing away my concern like a pesky fly. Once I cried in frustration, fearful that he would choke on huge forkfuls of dinner. He simply looked past me with distant eyes and continued bolting his food.
I allowed nothing to interrupt my daily visits with Ken, which usually lasted from late morning to 8 p.m. or so. From time to time, friends asked me to go to out and do something else for a while, take in a movie for instance.
“It will be good for you to take a break,” they’d say. “You look exhausted.”
I was losing weight because I couldn’t eat. I couldn’t exercise because I was too tense. I couldn’t work, couldn’t sleep, couldn’t meditate, couldn’t do much of anything because I couldn’t concentrate on anything but Ken. I couldn’t stop talking about him when neighbors invited me for dinner, even though I tried to talk about anything else. Always, the tether of our connection tugged at me, terrorizing me with its fragility, the thought of how it could tear and carry my husband away forever. But if we were together, I could grab the end and hold on for dear life so no other horrible thing could happen to him.
“No. I’m fine,” I replied to my friends, my resolve steely. “I have to be with Ken.”
* * *
The day before his scheduled homecoming, Ken was rushed from rehab to Tucson Medical Center (TMC) with a pulmonary embolism, a blood clot in his lung that could break loose and stop his heart or cause a stroke. This life-threatening setback whipped my unending fear of impending calamity into overdrive. Already operating mostly on adrenaline-fed autopilot after a grueling month, I forced myself to keep going, one trembling foot in front of the other. Ken had no family in Tucson besides me, nor was I about to turn him over to someone else in any case.
The gray, depressing atmosphere of the hospital was crushing after the cheerful rehab center. Ken was not allowed out of bed for the first few days. Once the crisis was over, he received very little physical therapy, so I gladly helped him wobble down the halls when permitted. But after making such good progress in rehab, he was disheartened by the setback. He was weary of the terrible pain caused by the embolism—comparable to a long-lasting heart attack, we were told. The morphine helped a little, but the pain never left entirely, which wore Ken down. One of the drugs injected into the back of his hand burned his veins, often bringing him to tears. He was still wearing the hard plastic collar around his neck to protect the broken bone at the base of his skull, and it was never comfortable. His broken right hand was in a cast. Ken had always been physically active; now he could barely walk, and only with help. Worst of all, the brain injury had damaged his memory and other mental functions, which he knew in some fuzzy way but could not fully grasp. He felt thwarted and betrayed by his inability to function as vitally as he once had. “Will I ever get better and come home?” he asked.
One morning when I called, he whispered into the phone, “I don’t know where I am. I think I’ve been kidnapped by foreign nationals.”
I gasped. “Oh, sweetie. No, you’re safe. You’re in the hospital. I’ll be there soon.”
He was regressing. He had to go back to the rehab center, now.
His doctor only made the situation worse. He would never deign to talk with me, but instead talked with only Ken — a brain-injured man currently on morphine who usually had no idea what day it was or what had happened an hour before. More than once, he told Ken, “Maybe you can go home today,” when that was clearly not the case—any idiot paying attention could see that. Each time, Ken’s spirits fell further.
When I arrived at his room one day, he mentioned how he had considered simply “floating out of here” the night before.
He wanted to die.
A cold, murky wave threatened to drown me. I worked hard to keep the shock off my face as my mind began churning with reasons why he should give up such thoughts.
Ken spoke again. “But I decided to stay because you need me.”
“I do need you, sweetheart,” I replied, relief taking wing throughout my body and moistening my eyes. “I’m so glad you want to stay here. I need you, too.”
“You come every day and sit with me and help me,” Ken said. “I’d be so lost without you. I delight in your persistence.”
I laughed at the unexpected formality of his language, which was so much like the old Ken, and he laughed, too.
His discouragement dispelled, he said, “I want to get through this and come out on the other side.”
Later that afternoon, a member of his men’s group came to visit. Ken told Larry and me he had decided to sell his motorcycles and give up riding. Larry was relieved, explaining how the group members had been preparing to do whatever was necessary to convince him to quit.
“If I’m going to get hurt again, it’s not worth it,” Ken said.
As relieved as I was, I was going to keep those photos in reserve. Just in case.
* * *
With the embolism dissolved after a week in TMC, Ken was transferred back to the rehab center for a few more days. He needed to regain the progress he had lost and be tested to see how well he could function outside the protected environment. Jeff, his occupational therapist, offered several choices for the test — tasks Ken would normally do at home — and Ken chose to make an omelet. Cooking our breakfast had always been his Sunday morning job, and he was eager to discover how well he would do. So Jeff purchased half-a-dozen eggs, an onion and mushrooms, and some shredded cheddar cheese.
On the appointed morning, Ken and I walked from his room to the patients’ practice kitchen. He was out of his wheelchair, and I guided him to walk in a straight line; the brain injury still often sent him veering to the left. I’d brought our camera to document this momentous occasion.
Even though the kitchen was unfamiliar, Ken easily found all the proper utensils and equipment. Since his right hand was still in a splint — and he was not yet allowed to handle sharp objects in any case — I chopped the vegetables. Then Ken took over, concentrating but also laughing and joking as usual.
He broke all six eggs into a Pyrex measuring pitcher and mixed whites and yolks together, oiled the pan, sautéed the veggies before adding the eggs, then finally sprinkled on the cheddar before folding one half of the omelet over the other.
Only a month before, Ken had been unable to walk without assistance, read or figure out how to change the channels on the TV in his hospital room. Today, he had made a perfect omelet—gigantic and golden — on his own.
I snapped photos of the event. The last picture shows a proud, smiling Ken — wearing his red and white pajamas, with his now-shaggy gray hair and beard curling over his gray cervical collar, with a tan splint on his right hand — holding up his creation on a white plate. We took the omelet to the dining room and ate it for lunch. I couldn’t have been prouder of him.
Later that afternoon, Ken couldn’t remember the word “omelet.” No matter, I thought — he had passed his test with flying colors.
* * *
Forty days after the accident, Ken came home. As happy as I was, terror still shrouded me, and in some ways it grew worse. Now I was the only person responsible for my husband’s safety. Much later, a friend wondered why I didn’t hire someone to help watch over him, but that thought never occurred to me. Even if it had, I wouldn’t have acted on it: No one understood Ken or what had happened to him as well as I did, and no one would be as attentive to him.
His therapists had warned me about the perils of caring for him at home. Brain-injured people can be unpredictable and unreasonable. They might not understand how they’re putting themselves in danger. They sometimes forget they can’t do a task they used to do with ease, and then can hurt themselves.
Ken’s balance was still off-kilter, and he stumbled a lot. What if he fell and hit his head on our concrete floors, or slipped in the shower? What if he stopped breathing beside me at night and I didn’t hear? His short-term memory was damaged: what if he put something on the stove, forgot it, and burned down the house? He had agreed to not go out to his woodshop, but what if he did so anyway and cut off a finger or a hand? He promised he wouldn’t drive, but what if he got behind the wheel anyway and hurt himself or someone else, or wrecked the car?
I had to remain vigilant. Ken still needed protection, and there was no one to protect him but me. Sure, he was slowly getting better, but full recovery, if that happened, was a long way off.
One morning shortly after the homecoming, I noticed that several large bruises darkened Ken’s left side, which was bulging. He was taking blood thinners to prevent another blood clot, and we’d been warned that he could suffer internal bleeding. Panicked, I called our family doctor, who said to get Ken to the emergency room. Once again in full shrieking hyper-drive, with chest pain pounding and nearly faint with fear, I managed to drive Ken back to TMC. What if he was slowly bleeding to death internally? The blood thinners meant he couldn’t have surgery. God, he couldn’t die now.
Ten exhausting hours later — after I sobbed in front of Ken and a nurse, more from sheer exhaustion than anything—the “all clear” was delivered. There was no internal bleeding; the bruises were old, from injections he’d received as treatment for the blood clot. The doctor had no idea what caused the bulge in his side but knew it wasn’t harmful (later, we discovered a nerve crushed in the accident had left the muscles flaccid).
Yes, we were relieved. But my skin had thinned to the sheerest fabric, worn nearly through by the unrelenting onslaught. I had only the most fragile hold on whatever was preventing me from crumbling into a pile of burned-out fragments.
But one more time, my resolve had seen me through. I had done my job of protecting Ken. For weeks, I drove him to outpatient rehab sessions and doctor visits, sometimes two or three a day. Just scheduling and keeping track of everything felt overwhelming. Adrenaline kept gushing, though; my body was habituated to the buzz. Still not sleeping well, I was bone weary. It felt as if my life had revolved around Ken forever. I loved him, but now the tether felt so tightly wrapped around me, it was cutting off the circulation and leaving me numb.
One day Ken told me he’d been in the garage and climbed up on a small step stool to reach something high in a cabinet. I was furious.
“How could you do that without me there to help you?” I raged. “You could have fallen and hit your head again. You know how wobbly you are!”
“I was very careful,” he explained in the irritatingly patient way he had begun to use, as if I was the brain-injured one. “I held on to the side of the cabinet and watched where I put my feet. I didn’t fall.”
“I don’t care! Dammit, I’ve been watching out for you all this time, and I won’t let you get hurt again.”
“I won’t get hurt again,” he said, still calm. “I have to start doing things for myself if I’m ever going to come back all the way.”
“Not yet. If something bad happens to you now, it will be my fault. I couldn’t stand that.”
“No it won’t be your fault. If I think it’s safe, I’m going to do it.” He was adamant.
Still infuriated that he would not listen to reason, I turned away and left the room, angry tears falling down my face.
“I’m responsible for you, goddammit!” I flung over my shoulder.
* * *
As spring continued, Ken’s improvement followed a stair-like pattern — a step up to remembering something for a lengthier time, better balance as long as he was rested, or a little less confusion in a stimulating environment like a mall, followed by a plateau as the gains consolidated before he took another step upward. Gradually, I began to relax my vigilance somewhat, probably as much from exhaustion as from seeing him improve. But even as the tether loosened just a bit, I remained aware and slightly on edge, one ear cocked to his movements around the house, for instance, while I worked in the office.
By early May, five months after the brain wreck, his outpatient speech/cognitive therapist, Susan Schuster, was enthusiastic about his progress. She appreciated his fierce determination and drive to recover as much as possible; they worked hard during their sessions as she asked him to remember and repeat back to her groups of words she read aloud, or to decipher simple logic problems. I was proud of him, too. But I was with him all the time and could see that, in the nature of traumatic brain injury, even with the improvements, he still stumbled frequently, couldn’t remember a conversation of twenty minutes earlier, or refused to accept that he could not yet do everything he used to do.
Then one day, Ken announced he was going to drive up and down our street. Before leaving rehab, he had signed a contract with the counselor assigned to him there that he would not drive or use his woodshop until he received informed medical permission to do so.
“No,” I said. “You can’t drive. You’re not ready. And you signed your contract.”
Keeping his word had always been a matter of honor and integrity for him, so I figured reminding him of the agreement would stop him. It didn’t.
“I’ll be careful. And it’s a private street so I can’t get arrested.”
“Honey, that’s beside the point, and it’s not even true. You could hurt yourself or somebody else. You can’t drive yet.”
“I’ll be careful.”
“But if there’s an accident, all someone has to know is that you had a brain injury and we’ll get sued like crazy, even if it’s not your fault.” My voice was rising.
“I’m ready to drive.”
For once, I knew I was not overreacting and was prepared to hide the keys if necessary. Fortunately, Susan talked him out of this plan in a sensible way. I always seemed to get sucked into an argument with him, which his new obstinacy would never allow me to win.
“You’ve worked so hard, Ken,” she said, “and if you start driving before you’re ready and had an accident, that could undermine all the good progress you’ve made so far.”
Fortunately, Ken agreed. Soon, though, as the coordinator of his outpatient care, Susan gave him permission to take a driving test with a special coach. This woman, herself in a wheelchair, was trained to judge the driving abilities of disabled people. Tired of being the family chauffeur after all this time, I was happy for Ken to take the test, although my anxiety fluttered in the background. Just like his omelet-making test, he passed this one, too.
The first time he took the car out alone, memories of Dec. 29 flooded back: He’d gone out and hadn’t come home for forty days. I was too jumpy to sit still for long. My ears stayed cocked towards the garage, listening for the door to roll up and his car to pull in. Our tether still tugged at me, but maybe a little less strongly than before.
Then before too long, Ken said he wanted to go back to work. My chest pain flared.
No. Not yet. We were managing just fine with his disability payments from Raytheon, his employer since Spring 2001, and I was working again. No. He should stay home for a while longer. Maybe take the summer and be sure. He still had that vague look sometimes, which meant he was feeling confused and lost. Too much stimulation — like several people talking at once, or being in a crowd—sent him reeling mentally and emotionally. He was still shaky on his feet, and stumbled a lot. He still needed to nap frequently; a healing brain steals a tremendous amount of energy from the body. He was driving again, but his reflexes were still a little slow, and heavy traffic sometimes confused him.
At our next appointment with Susan, she agreed with Ken about his return to work. As long as he started with only two hours a day, and his doctor and employer approved his return, she said, he could return to his job as a programmer.
She was right, Ken was right, but my emotions stormed. I had no words for the resistance that boiled up, but it was fierce, flowing from the same place as my resolution to protect him. Feeling like an idiot, I mumbled my excuses and went out into the hall, my jaws aching from holding back tears.
Sitting in the waiting area and turning my face from the people who walked past, I wondered why I was so afraid to let Ken step back into the world. He was a grown man yearning for his former independence and normal life; even talking about going back to work made his face light up. He was still fragile, but he’d been careful so far. Susan often declared he was one of her best patients because of his enthusiasm for pushing himself hard and never giving up. I knew he had to go back to work sometime. I very much wanted the quiet silence of the house during the day so I could write in peace again. In truth, I had been smothering him of late with my over-protectiveness. What the hell was my problem? Shouldn’t I be overjoyed he wanted to go back to work?
* * *
Around this time, I found and copied into my journal a fragment of a poem by Rumi:
Go through the ear to the center
where sky is, where wind,
where silent knowing.
That is what I did about Ken’s desire to return to work. All the terror and trauma of the last few months had pushed me into a state way beyond fatigue, near to craziness. If I was ever to recover — and allow Ken to recover — silent knowing was the only way to do it. So I did my best to remain as calm as possible, trusting that an answer would emerge.
Several days later, an insight washed over me as quietly as a ripple in a pond, and just as peacefully. After all the recent drama, it seemed anti-climatic, but it was exactly right. As I allowed it to unfold, it revealed several parts.
Ever since that evening when I’d received word of Ken’s accident, my life had converged to one absolute point. All else fell by the wayside as I remained laser-focused on my One Purpose: fierce guardianship of my sweet, broken beloved. I became the angel with the crossed, flaming swords blocking the entry of anything evil.
Never before had I felt so needed as I was by Ken these last months. As oppressive as it had become now, I had loved that feeling. My heart lifted and glowed to see his face light up whenever I walked into his room at the hospital and later at rehab. Even when he couldn’t remember exactly who I was, he understood in his heart, if not in his damaged brain, that I was a stable, familiar presence who cared about him. I was his only constant in those horrible, terrifying days when everything, even his own Self, swirled in chaos around him. He was always so delighted with whatever I did for him, even the most mundane things, like helping him to dress, walking him to the bathroom, bathing him, or putting a straw into his can of soda at lunch when he couldn’t manage even that. He told me he didn’t let himself die because I needed him: He had needed me that much.
I did not want Ken to forever remain so dependent on me at all. If he had, our story would have been very different. But it was as though his dire need called forth from me a tenderness so inexpressibly loving and dear, I never wanted to stop feeling it. It pulled me so cleanly out of my usual self-absorption into the place where the best parts of me existed in service to another, who was wounded in body and soul. Long ago, I had chosen to remain childless, so perhaps this was how mothers felt about their fragile, innocent children.
In truth, the terror and tenderness of these five months had been so keen and piercing, had so stripped me of any frivolous distraction, I’d never felt so alive. But once Ken went back to work, all this would be lost. In allowing him to once again navigate his own way in the hostile world, I would have to return to whatever ill-defined, scattered things I had done before the brain wreck. My days of single-minded focus, in some ways the simplest and most meaningful time of my life as well as the most difficult, would be over. Gone also would be the noble drama of the strong, virtuous wife caring for her injured husband. Along with it, I had to admit, would go the attention I’d received for that.
All this drama had bound me with ropes fashioned of adrenaline and stress chemicals gushing through my system until I was no longer able to free myself, or even envision my life without the struggle. Dialing back the intensity to the level of regular life seemed so dull by comparison, so full of mundane struggle. Like being home alone to write in the quiet house all day, like waiting to hear from editors if they wanted a piece of writing, like not fearing what catastrophe would next befall my husband — like sweet, sometimes boring, normal life, like something to be cherished.
Against very high odds, my husband had not died. He was, in fact, recovering with very few of the horrendous effects that can arrive with brain injury. He was able to be independent again, for which we were both undeniably grateful. He still loved me.
And it was time for him to go back to work.
With approval from Susan, our family doctor, and the medical director at Raytheon, Ken began with two hours a day. He came home exhausted, sometimes afraid he would not be able to continue. But continue he did, working up to four hours, and then five, then six; by summer’s end, he could work a full day. When he felt muddled, which was often at first, his co-workers were patient and kind. He dearly missed riding his motorcycles to work and elsewhere, but he sold them all to keep his word that he would not expose himself again to that kind of danger. The first brain injury meant that a second, no matter how minor, could lead to exponentially worse consequences.
For weeks, every time he left the house, the buzzing flooded my body, and the pain intruded lightly beneath my left collarbone, ready to stomp again if necessary. But once again, silent knowing provided comfort: there was nothing I could do to protect him out there, so the worry was only hurting me. I would simply have to trust he would remain safe and come home to me every day.
So far, nearly five years after the brain wreck, that’s been true. Ken has returned nearly all the way to his old self — a miracle, given the severity of his brain injury — and I have recovered, too. Sometimes, it seems the accident never happened.
That summer when Ken returned to work, I showed him the photos I’d taken in ICU, first preparing him for the sight of himself so broken — of which he had no memory — and offering my reason for taking them. He studied them for several minutes and then raised his face to me, his eyes filmed with tears. He held out his hand, and I reached over to take it.
“Thank you for taking such good care of me, Boo,” he whispered, using my new nickname and unable to speak louder. “I never would have made it without you.”
"Brain Wreck" from What I Thought I Knew by Barbara Stahura, Wyatt-MacKenzie Publishing, Inc., Deadwood, Oregon, 2008. Used with permission from Barbara Stahura.
Barbara Stahura is the editor of Brain Injury Journey — Hope, Help, Healing, a new magazine for the brain injury community, produced by Lash and Associates Publishing/Training.