TBI in Marriage

TBI in Marriage: A Husband’s Riptide

by Barbara Stahura

An injury to the brain is unlike any other injury 

In my favorite photo of us, we’re astride Ken’s BMW motorcycle in our Tucson driveway. Ken is laughing at the camera as I, sitting behind him with arms clasped around his waist, kiss his ear. We wore none of our usual protective equipment—full-face helmets, boots, jackets, gloves—because we had jumped on the bike strictly for the photo. Months later, Ken was wearing all his gear when he took his other motorcycle, a Ducati sport bike, to run some errands. But when a white sedan turned suddenly in front of him, there was nothing he or his equipment could do to prevent what happened next. Ken hit the passenger side near the back wheel; helmet striking steel, face smashing into helmet, brain slamming into skull. He crashed to the asphalt. The sedan disappeared.

An injury to the brain is unlike any other. Along with physical functions, the brain controls awareness, personality, temperament, and cognitive processes like memory—all those things that commingle to form a “self.” And while that self does not necessarily reside in the brain, the brain is the part of us that animates it. So a traumatic brain injury can kidnap the dear self of someone you love, dragging him far from shore as a riptide does a swimmer, sometimes beyond rescue, even though in reality he is holding your hand or smiling at you across the dinner table.

The shock of seeing him in the hospital and hearing the words “brain injury”

The day of the accident, exactly nine months after our wedding, Ken left around noon and had planned be home in a couple of hours. Instead, I found myself at the University of Arizona Medical Center’s ICU around 7 p.m., staggered by the sight of my husband. There was a ventilator tube in his mouth; a cervical collar around his neck; a stitched cut above his left eyebrow; left eye purple and swollen shut, right eye nearly so; nostrils filled with crusted blood; broken right hand captured in a sling; left hand tethered to the bed rail. Naked under a single sheet and his face streaked with dirt, Ken moaned and tossed in delirium.

A CT scan showed two minimal contusions on Ken’s brain. The neurologists told me worse injuries invisible to imaging machines were likely. The brain floats within the skull, and if the head’s momentum stops suddenly, as Ken’s did when it came to an instant halt against the car, the brain rebounds within its bony home in a motion called coup contrecoup. Neurons are sheared off: Millions of connections in that tiny, internal universe can, like exploding stars, blink out of existence in an instant.

My husband now speaks but can not communicate 

That Ken had suffered a traumatic brain injury (TBI) became apparent when he could talk again, four or five days after the collision. Much of his speech consisted of parroting words in a sing-song voice. After developing aspiration pneumonia, he tried to cough but couldn’t cough deeply enough for relief. Smiling at him and stroking his forehead, I said, “Bummer.” He sang back, “Bummer, bummer, bummer,” 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 to “Happiness is a warm country.” But as Ken began to speak in complete sentences, I grew more alarmed.

“I have to rewire your circuitry so I can manage you better,” he told me in all delusional sincerity. He claimed his staid, seventy-seven-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 software engineer) and that Scott, his chiropractor, repaired his motorcycles. One night, when he couldn’t even sit up without help, he somehow clambered over the bed rail, wandered down the hall, and fell, hitting his head. Fortunately, he incurred no further injury. The nurse who called me 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.

After this incident, Ken was placed in a Vail bed, a mesh-sided, enclosed bed that zips from the outside. Much better than putting him in restraints, the nurse told me.

Ken’s short-term memory also had been damaged. He recognized everyone who came to visit but for weeks could not recall that anyone but me ever had. 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.

During the first few weeks, even though Ken carried on long—if sometimes weird and oddly chatty—conversations, he never really engaged with anyone. He spoke animatedly, but his gaze was distant, unconnected. Although physically in the room, he was not present; he existed in some inward place, unable to transcend the damage to his frontal lobes.

He is s different person – is this my husband?  What will it be like to live with a person with a brain injury?

His rehab team warned me that impulse control is often a casualty of TBI, and Ken was no exception. Still weak and in danger of falling, he moved too quickly for safety. He gobbled his food. I became a nag, perhaps too protective but terrified of another injury. 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.

A month after the accident, Ken developed a pulmonary embolism and was transferred from rehab to an acute care hospital. One morning, he called me from there. “I don’t know where I am,” he whispered. “I think I’ve been kidnapped by foreign nationals.” I stood in our kitchen, phone to my ear, stunned. Just yesterday, he had sounded so normal again. Where was the man who had looked so intensely into my eyes as he said, “I do”? Smart, articulate, an enthusiastic reader, an excellent computer programmer and woodworker, the real Ken had disappeared, replaced by someone who looked just like him but was missing essential ingredients. Should I have applied for his Social Security disability, as his case manager had advised? Would I forever be his caregiver, exhausted, frightened, and missing him?

If I could only see inside his brain

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. I researched TBI on the Internet, read books about it, and found many chilling and many encouraging stories about survivors. I pestered Ken’s doctors and therapists with questions—Would Ken’s brain heal? How much? When? —but of course, no one could provide the answers. There was nothing to do but move through the days.

When a reason for hope appeared, I clung to it—the first time Ken hugged me, remembered our phone number and called me at home, recalled a visit from neighbors the night before. And when hope lagged, I read reminders I’d hung around our house: “Relentlessly Optimistic.”

Two days before his homecoming, my husband made an omelet—perfect and golden—just as he used to make for us every Sunday. All by himself. It was part of his occupational therapy. I took photos, the last one showing Ken standing in the rehab kitchen, proudly displaying his creation. We ate it for lunch. Later that day, he couldn’t remember the word “omelet.”

Nine months post-accident, Ken still fights headaches and fatigue, and fears he’ll always be wobbly on his feet. His memory is better, although the right word often eludes him, but he still wrestles with once-easy tasks, thanks to damaged cognitive functions. He has sold his two remaining motorcycles, returned to work, and vows he won’t abandon himself or me by giving up. Nearly released from the riptide, my husband, resolute and a little scared, struggles to free himself for good. When we vacationed along the Pacific Ocean, we walked the beach every day. I watched Ken cheering the surfers cresting their waves, and I silently cheered him, praying his determination would be enough to return him all the way to shore.

This essay originally appeared in the Jan.-Feb. 2005 issue of Science & Spirit

See more articles by Barbara Stahura about returning warfighters with TBI: http://www.barbarastahura.com/SoldiersBrainInjury.pdf

http://www.barbarastahura.com/silentinjurycomeshome.html

And about her experience with her husband, Ken: http://www.newsweek.com/id/37348

Recommended reading

By Barbara Stahura and Susan Schuster, M.A., CCC-SLP

This workbook guides survivors of brain injury and blast injury through the powerful healing experience of telling their own stories with simple journaling techniques. By writing short journal entries, survivors explore the challenges, losses, changes, emotions, adjustments, stresses, and milestones as they rebuild their lives.

Lash Blog Permission

8 responses to “TBI in Marriage”

  1. Anne Wade says:

    My beloved husband of five years, a retired Marine, sustained a brain injury 22 years ago when the Humvee he was in hit an IED. Back then, the military wasn’t documenting TBI, so he was diagnosed with physical injuries and PTSD. He had no clue he had a brain injury.The treatments provided by the VA were off-target. He was repeatedly hospitalized for being bipolar(He’s not) and suicidal (He sometimes is),and his marriage ended. We met and married a number of years later. During our courtship, he told me he had PTSD, but admits he covered his worse symptoms. He was in relatively stable period and I realize now it’s because his therapist had helped him create a carefully controlled environment. The stress of new marriage, of sharing a home and a life with someone else, has exacerbated all his symptoms and our marriage is in crisis. We love each other (He is such a good man – warm, intelligent, funny) and are seeking resources wherever we can find them. Some days, we’re in it together. Others, he blames me 110%. The Brain Injury Association Chapter in South Carolina seems more focused on children and social opportunities for the injured. While that’s lovely, I’m looking to connect with other spouses, and with therapy and/or skills training for spouses. It has shocked me the degree to which even people in health care and mental health care are uninformed and uneducated regarding brain injury. Online resources would be just fine until something more local is available.

  2. Karen says:

    I, too have felt all of your feelings. I feel so alone and unloved. I lost my best friend, my husband , to a Cardiac Arrest 6 years ago. He is a TOTALLY different person now, more of a child. As one person here said, he looks like my husband, but he is not. He doesn’t even know that I am his wife!
    I live day by day, not with hope anymore, but with mental and physical exhaustion. The friends we had, barely keep in touch anymore, and relatives just can’t bare it. I was married to this man ,35 years, and all my beautiful memories with him haunt me every day. Every place, every song, every thing we did together brings a sadness to my heart because I can no longer share it with him. My heart yearns for his love.

  3. Barbara Stahura says:

    Hi, Faith. I agree that it’s good to know you’re not alone while caring for someone with a brain injury. Family caregivers need lots of support and TLC, yet often we don’t get it. I hope you have found, or will find, a good support group or a therapist experienced in brain injury. My most important message to family caregivers is to care for yourself, too– not only because of the important job you have right now but because you deserve it, just for you. You didn’t mention the extent of your husband’s injury, but I hope he is able to recover well over time. And it does take time. And you will recover too.

  4. Faith Lobdell says:

    My husband also suffered a TBI, 3 days before our 9 month anniversary, when his motorcycle was rear ended by a SUV. My experiences have been very similar to yours, though it’s been only 5 months since my husband’s accident. Thank you; it’s good to know I’m not alone.

  5. Kelly Stone says:

    This posting really hit home for me. My husband was in a car accident that resulted in a brain injury 2 1/2 yrs ago. Parts of your story feel very familiar to my own journey. I would love to be in touch with other spouses who know what I’m going through. Knowing we aren’t alone is a great support. Deborah W., if you ever check back in and would like to email me, my contact is k_stone92@yahoo.com 🙂

  6. Dear Deborah,
    You sound so exhausted that it is important for you to take care of yourself first. One of the most frustrating aspects of being a caregiver is when the survivor doesn’t recognize or acknowledge his limitations or disabilities. This may be due to damage to the areas of the brain that control insight and self-awareness. While it may look like denial or stubborness, it can be caused by neurological changes. You do not say where you live but if you are in a state with an active Brain Injury Association, most have support groups for family members where you will certainly find support and understanding from others in similar situations. I also suggest you consider talking with a counselor or clergy – preferable one with experience in brain injury – to support you and also give you a place where you can talk about the stresses and emotions that are affecting you. Remember, you can’t care for your husband if you don’t care for yourself first.
    Best wishes,
    Marilyn Lash

  7. Deborah Wallace says:

    I took a chance and searched ” wives of head injury husbands” and to my delight found you. Hi, I’m Deborah and my husband had suffered global brain damage in 2001. I don’t know him any more. He’s so different. for the last 10 years I’ve been trying so hard,but the problem is… he doesn’t think he has brain damage! Mark (my husband) has refused disability yet can’t hold down any job longer than a month. I’m so tired. I’m doing it all. I need help, someone who knows what I’m dealing with. Would you please help me.I know I sound needed, I am, I’ve reached that point. I would appreciate any advice or wisdom you have to offer. Thank you so much for reading this.

  8. Wow, great blog article. Awesome.

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