Catching the Bus: Red Light Blues
The curious thing about the auto accident that ended my life was that I lived through it. On January 31, 1996, Death sneaked through a red light disguised as a minivan going 50 miles an hour. ’Course, nobody told me that when they finished pulling me out of my car, they were putting me right on the bus.
That’s what I call the process of recovering from traumatic brain injury: “getting on the bus.” It’s a good thing they strapped me down and fastened my head to a board. Had I understood even a little of the journey that had just begun, I would have hit the ground running! I have always held the utmost respect for brave souls who face death with class and grace; who, with their last earthly breath, cite poetic verse on the meaning of life or seek to calm nearby witnesses from the awkwardness of impending demise. Luckily, I had no witnesses nearby. I had probably a second to sum up life as I’d known it. In the moment I thought I was about to die (to my vast surprise), I faced it with these courageous words of wisdom: “I’m fucked!” So much for class and grace.
I got pasted. To this day I have lost the morning of and the two days prior to my accident. I may have lost the third day also: wasn’t that the day Publisher’s Clearing House was supposed to show up at my front door after the Super Bowl? The sound of the crash of thousands of pounds of fusing metal was, I thought, unspectacular. Maybe I’ve watched too many movies. My first thought was how to get out of the car with the driver’s side door lying in my lap. They say the mind protects us from dealing with events too traumatic to process immediately. For whatever reason, I was a bit oblivious, entertaining myself with thoughts peculiar to the moment. I was happy I had just showered and shaved my legs. My mother’s line (everybody’s mother’s line), “Always wear clean underwear in case you get into a car accident!” struck me as particularly funny. I was relieved my dogs weren’t with me. I giggled at the thought that I had wanted to get the chip in my windshield fixed; the windshield now lay shattered all around me. I asked a woman at the scene to pass her cellular phone through what used to be my window so I could call my brother and tell him what had happened.
Perhaps I should have realized something was wrong when I didn’t care that three young, handsome medics were cutting off my clothes and probing my naked body (I didn’t even suck in my stomach!). Maybe I should have guessed that my brain had been squished when I could not think of where my brother worked or what his phone number was. Or when I allowed the woman from the emergency room to slide a bedpan under modest me without a second thought.
Seven or eight hours later, they released me with a gruesome headache, a new pair of scrub pants, ill-fitting crutches, and vivid colors on my body. I also left with the feeling that I was damned lucky. Blessed, if you will. Like I had walked right up to Death and tweaked him on the nose.
Witnesses at the scene called it a miracle that I survived. The police told me that if I hadn’t been wearing my seat belt, the witnesses would have been treated to the sight of Kara flying out the passenger side window. Even as they pulled crumpled glass from some pretty incredible places on my body, there were no cuts and no broken bones, only doctors left shaking their heads in disbelief.
We celebrated my survival that night with pizza and painkillers (a favorite combination still). I told my bosses, who had stayed with me at the hospital and taken me home, that I would be back to work in a week, tops.
I wrote this book because the understanding of traumatic brain injury is very limited outside the medical community that specializes in it — much less among average “civilians.” I left that hospital without a clue as to what a head injury was or what that diagnosis would soon imply. Every year, thousands of people join me and unknowingly bid farewell to the lives they had known. Whether the diagnosis is termed “traumatic brain injury,” “closed head injury” or “severe concussion,” many survivors are learning the tough lesson I learned: sometimes when your life ends, you don’t actually die.
My doctor and my psychotherapist encouraged me to write this book. Not because my story is remarkable. Not because it’s a tale of cosmic proportions. On the contrary, my story is unfortunately all too common. I wrote it because there are new faces on the bus every day. Faces of people who realize something is wrong with them, something they cannot yet understand. Faces that have no idea how lengthy and difficult the process of recovery is going to be. I wanted to write the book that I wish I could have read when I was first diagnosed with a brain injury.
Whether I have accomplished that or not, I honestly don’t know. One of the residual problems from my injury is that I am largely incapable of tracking a story for long. This might be the first book ever written that the author hasn’t really read.
I have attempted to address some of the potholes and barricades that I came upon—and often tripped over or fell into. I kept a journal, first to counter my short-term memory loss, then as a marker of progress and a sounding board for frustration and hope.
This is for everyone on the bus. It’s about our hard-fought battle. It’s for every survivor who fights that battle every day with courage and strength, frustration and wit, grief and confusion, begrudging acceptance and hopeful determination. It’s for families who seek answers to questions they don’t even know yet to ask. It’s for friends and coworkers of survivors who find strangers hidden behind familiar faces.
It’s also for the thousands of people committed to the prevention and treatment of brain injury. These medical communities, mental health practitioners and legal professionals offer care, protection and hope for survivors and their families. They provide counseling and legal guidance, and bring desperately needed resources to survivors who find themselves lost in a recovery they are often ill-equipped or ill-prepared to take on. Part of the proceeds from this book will help some of these people afford the tools they need to help rebuild lives that have been rocked to their foundation by the devastation of head trauma.
And finally, the book is for my personal support group. I came to think of them as TEAM KARA. I want this book to be a “thank you” to the doctors, therapists, attorneys, friends and family members who, when they realized I had gotten on the bus, climbed on board and sat right next to me. I am forever grateful.
Litter and Lingerie: Meeting the Monster
February 2, 1996
I thought the dogs were just happy I’m home ... they’ve been sitting here in front of me all morning smiling and wagging their tails. I felt truly loved until I found the empty 4-pound box of dog bones Diana bought them yesterday. No wonder they’re smiling. I counted 13 used coffee filters in the garbage. Still warm ... what’s up with that?
February 5, 1996
I am sitting somewhere in the bleacher seats of my mind.
They say the first year of marriage is the most difficult. You’re learning how to live with a new person, what works and what doesn’t. You see facets of this person you have never seen before and you realize some of the things you’ve been doing for many years now need to be compromised.
Surviving a brain injury is like that, only the person you’re living with is you and the gown they let you wear on the big day is open in the back and not quite as flattering. Those first few days and weeks after the accident were an introduction to symptoms I did not have the vocabulary to communicate, the experience to understand, or the desire to accept. There were things I noticed, sure. Peculiar things that did not seem like me. But I looked back and recalled that I had always been healthy and had always bounced back from injury quickly. Unfortunately, I would soon find that I was way out of my league. This was no sprained ankle. My doctor, Sharon Cini, suspected a closed head injury and confirmed her diagnosis two days later. When she told me, I shrugged. I expected the pill or the shot, or even the surgery, that would bring me right back to my normal life, no worse for wear. When she started to describe a process that might take weeks, months, or even longer, I simply chose not to believe her. Nice woman, I thought, but certain to err on the side of caution.
Evidence mounted, though. I couldn’t remember from one day to the next when people had called. I couldn’t recall when I’d last made a pot of fresh coffee—evidenced by those 13 used filters. My head hurt, continually, stubbornly and brutally. I found my dogs outside and didn’t know how long they’d been there. I poured kitty litter in the washing machine instead of detergent. It was interesting to find my bras in the silverware holder.
And I craved things. Weird things. Things I never really ate before the accident. White chocolate and lobster and pancakes and oatmeal. Corned beef hash and fried egg sandwiches. I ate plain, canned, boiled potatoes for three weeks straight at one stretch.
My friend Rita took me out about a week after my accident. Besides trips to the doctor, it was the first time since the crash I had been off the couch and out of my pajamas. As I walked, my legs seemed to have an agenda all their own. They were dipping and giving out and seemed totally oblivious to the concept called walking. Rita termed them “toddler legs.”
I had already fallen twice in my home by that time, but I thought the lack of activity had simply weakened my legs. It seemed logical, after working countless 18-hour days, that the abrupt change in activity might affect them. I decided not to worry.
My family and friends didn’t know anything about head injury. We didn’t know how to interpret what we were seeing. Surely my problems sleeping were due to the medication. Surely my legs were just weak from being on the sofa for a week. I just needed more sleep, more soup, another day, another week. The problems would wear off like a bad hangover.
Most of the time I felt I was in slow motion. Everyone talked too fast. Words I wanted eluded me. I nodded and smiled through conversations that I had lost track of many sentences before. I didn’t know enough to be scared. I figured I would just fake my way through everything until I was normal again.
My legs twitched and my feet were forever falling asleep. My left eyelid drooped and would open more slowly than its counterpart. I called my friend Dianne, whose mother is a surgical nurse. She relayed information on the tests I would soon be taking and suggested hopefully that maybe the medication was wreaking havoc with my body parts. Even after the initial diagnosis, I clung to that possibility.
Still, Dr. Cini threw me right into it. I saw her the day after the accident, a couple of days later, then once a week for several months. Thankfully, she had experience in head trauma and knew what to look for and how to proceed. I would learn later how many survivors go undiagnosed—sometimes for years. She told me that we would have to wait and see, keeping tabs on the symptoms and noting them while my body worked to heal itself. She ordered tests and X-rays, scheduled appointments with specialists, and adjusted medications to eliminate the possibility that they were causing the memory and sleep problems. She wanted me to lie low for six weeks.
I was incredulous. Work was piling up by the minute and I had absolutely no time for an extended leave. I gave in to two weeks and, for the next three months, allowed my absence from work to extend only one week at a time. It was my way of fighting, denying, refusing to accept the magnitude of my injuries.
I thought I would simply tough it out. If this big ol’ badass head injury realized I was not going to give in, it would soon concede defeat and leave.
Cane and Able: Accepting the Diagnosis
March 4, 1996
I’m still tipping ... My legs still don’t work right. They’re usually fine if I keep walking forward but if I do that they’ll find me somewhere in Canada by April. Tomorrow I’m going to see my work friends for the first time since the accident. Craig brought me over a cane. I don’t want to fall in front of them.
March 12, 1996
I can’t sing. Not that I ever could, mind you. But I can’t follow the words! And my head won’t stop, even for a day.
Sometimes it’s the “headache hood.” It starts at the base of my neck and comes up the back of my head. Sometimes I’m wearing the “headache earmuffs.” It goes right over my head and hurts until I can’t hear. Last night I practiced dialing 911 with my eyes closed, just in case.
This is, at times, simply miserable. Everyone has to get on with their lives, I suppose. It’s no longer a simple act or a moment of crisis. Now it’s turning into this whole new way of life. It’s like the time after a funeral when everyone stops bringing over bundt cakes. ...
I feel really alone.
I want to return with them and leave this behind. I am over it now and I want it to end, thank you.
March 23, 1996
I will never forget the first time I saw Mom after she suffered her first stroke. She was lying in a hospital bed in a hallway, her head tilted to the side. I looked at her, and in her eyes was this fear I never imagined until today when I looked in the mirror and saw those same silent screaming eyes. I pressed my face up close to the mirror. I’m really scared.
Evelyn Wood would have been proud. The first time I decided to read a book after the accident, I made it down the first page in seconds flat. I tried again, more slowly this time. I read the first sentence and the next. And then, as if I were reading in the back of a truck while driving over the potholes of a Michigan springtime, I bounced around from line to line. I read the words in the middle and a few here and there, at the beginnings and ends of sentences. I closed that book and simply launched it. Right through my kitchen.
With my cat running for cover and my dogs startled from their sleep, I experienced the first of many snits that would later be termed “bouts of inappropriate anger.”
The tests didn’t hurt at all. Well, maybe one, but I’ll get to that later. They were a little scary, sure. Any time you inject dye into a person’s brain to monitor its activity, I think a little sweaty-palmness is only natural. I was scheduled for a CT scan of the brain, an MRI of the brain and one of the cervical spine. Because of the problems with my legs, I had a lower extremity bilateral X-ray. I saw a neurologist and a physiatrist (not a psychiatrist; that would come later).
Results were coming back normal. There was no evidence of intercranial bleeding or structural damage.
I was seduced by the term “mild.” Mild Closed Head Injury. Surely “mild” meant “soon back to normal.” When, curiously, my doctors could not give me the actual “heal date” that I demanded, I simply created my own timetable for when I would return to my normal life. This they would later term “denial.”
I did not respect the injury. I was beginning to believe that I had it, perhaps. But with the lingering bravado of youth I refused to entertain even the slightest notion that I would not recover quickly and completely. I started applying compensatory techniques before I even knew what they were. After coming out of the shower once with soap in my hair, and another time without washing it at all, I arranged the bottles and would open each cap when I went into the shower and close each one after using it. I started using Post-it notes for everything from who called to when the dogs were last out. I bought a whiteboard and started tracking my medications. Friends of mine, Diana and Marty, bought me a timer at the suggestion of MaryBeth, another of Dr. Cini’s head injury survivors. I would take my “candy” (as friends euphemistically called the rainbow mix of pills I had to take) whenever the bell rang, like one of Pavlov’s dogs.
The early answer was simplification. Trying to do all of the things I was able to do before my accident was not working. I could not talk on the phone and put dinner in the oven and open my mail and make coffee all at the same time anymore. I had to direct all the attention and focus I could muster toward one project at a time.
People in my life wanted progress almost as much as I did. They would call and I would tell them what little I was piecing together from my doctors. Part of the problem was that I was too stubborn to allow anyone to come in with me during my examinations. The information given to me in those examinations could have helped, had I been able to organize and remember it.
Later, I brought lists of questions into my appointments and the doctors would jot down notes for me to take home. What I didn’t understand or could not remember, I would simply fabricate, so I would be able to report some kind of ongoing progress. I was attempting to convince everyone, mostly myself, that anything considered “mild” could not be terribly serious.
Using a cane was a big step for me. We grow up thinking that canes represent the old, weak and frail. Perhaps I cushioned the blow with the belief that this would be temporary.
I was falling a lot by now and I did not wish to risk that embarrassment in front of my staff. I was a catering manager and we were all used to seeing me throw a case of beer on my shoulder and run up three flights of stairs without a thought. All of a sudden, I was about to see these people in an arena that would spotlight my injury, and I was scared that they would see me as vulnerable, damaged, disabled.
But the cane provided me with the help I needed to not fall down and that was that. It was also a signal to people who might be driving or moving around me that I might not be able to react quickly if need be. It didn’t mean dis-abled. On the contrary, it meant “now-better-abled,” and that was the first of many important lessons I would gratefully learn.
It wasn’t what people said, mind you. It was what they didn’t say that scared me. I would sometimes catch them trading “those looks.” I think we all wanted to believe that this kind of thing doesn’t happen to people who are young and in the prime of their lives. Nobody wanted to hear out loud what each of us feared silently. We took potent injections of humor mixed with denial. Looking back, I don’t know if it saved me or almost killed me.
I talk more about psychotherapy later in the book. But it’s important to mention here that about a month into my recovery, I got very tired of hearing how “lucky” I was. This was not some vacation-gone-wrong that I would return from with horrific tales of adventure. From the moment I left that hospital, I heard slap-on-the-back choruses of “It could have been worse!” and “God, you were lucky!” Intellectually, I understood that. But emotionally, I did not feel very lucky.
Life sometimes seems so much easier if you compare yourself to others who have it worse than you. I knew I could have easily been more severely impaired, cognitively and physically. I could have died. But when you compare yourself to your old self, it’s hard as hell. Late at night, I cried. When I thought about who I used to be and what I used to be able to do, I felt frightened and alone. Then the self-pity would kick in, and that made me feel ashamed.
Therapy became the place where I could begin the process of grieving for the life I had lost: something I sorely needed, and one of the hardest aspects of my recovery. The task was made more difficult by denial and the sickening feeling that I was somehow selfishly cursing Fate. I was detached from this person that didn’t work right anymore.
I didn’t like this person. I looked at my legs with a strange curiosity as they ignored my commands and slopped and sputtered. I felt like an impostor. I feared that the longer this new person leased my body, the closer she came to owning it. And I was scared that people would forget, that I would forget, the person I was before. I knew I had to find her but I had no idea how or where to begin looking.
Learn more about Kara Swanson and see some of her brain blogs.