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Neuroscience Center Traumatic Brain Injury Advocacy Group

 
Read: Jack's Book: A Journey in Progress
Jack’s book is a work in progress.

Prologue

"I hate quotation. Tell me what you know."
Ralph Waldo Emerson,
Journals (May 1849)

Life’s cruelest events, those with the most enduring consequences, often spring from the most mundane moments. May 6, 1989 was a case in point. That Saturday dawned as a day of celebration because Patsy and I were invited to back-to-back weddings. Neither of us could remember ever having attended two weddings on the same day, although I suppose it’s not that unusual. But for us, married just a year ago ourselves, it seemed an omen, an affirmation of our own commitment and love.

The first reception promised to be a gala affair at Tallahassee’s Capital City Country Club. It was a fine spring day, just this side of too warm, and wedding guests with cups of champagne spilled out onto the club’s spacious porches and its wide stone stairs. Spring azaleas had come and gone, but the winding green fairways of the golf course, bordered by massive, twisted oaks, provided a properly Southern, lush backdrop. It struck me that F. Scott Fitzgerald could have written that scene: beautiful people in expensive clothes, sipping champagne in a luxurious setting. Call me decadent if you must, but I liked it.

I remember little else about the reception. I don’t know if the club provided televisions for watching the Kentucky Derby, although I imagine they did. Several years later I looked up the results of that race; Sunday Silence won by two and one-half lengths. For some reason, I felt it was important to know that.

I must have retrieved our car from its parking space shortly before 6:30, because the accident report states that the ’88 Bronco struck us at 6:53 p.m. I later learned that the boy was driving 55 miles per hour when he sped through the red light; the speed limit was 35. The impact spun the Bronco around and it hit us again, that time propelling our car more than sixty feet. The Bronco itself flipped and rolled a couple of times, tossing its female passenger out a window onto the street.

Several people witnessed the crash and rushed to our aid. Police were on the scene in minutes, and we were soon driven by ambulance to Tallahassee Memorial Hospital. Everyone did their part, and the response went smoothly. People later commented that we were lucky no one was killed. I don’t blame them for not knowing that someone was.

TBI is more scary than terminal cancer because you died when you were injured but nobody knows this, not even you at first. Then as you start to realize the differences you learn some of them from the reactions of family and friends and especially if they will not take you as you are, and then you have to bury the old Jack all by yourself, and to try to learn your new self without any help.

Journal, April 25, 1990

I would like to remember more about that day, but I don’t. I do know that I wore a pastel paisley tie because the paramedics cut it from my neck and returned it to me; I still have it. Other accurate details were stumbled upon by accident, related to me by someone else, detailed in the official accident report, or, as with the Derby, later looked up. Many of my memories are similar to the results of an old-fashioned barn-raising – constructed with the help of others.

What does one remember of a TBI when amnesia often rules your life for months, and years? What does Patsy remember? Her memories might contrast with my ‘studious reconstruction’ thru evidence and interviews.

Journal, March 17, 1991

I’ve had a lot of years to wish things had gone differently, to play various scenarios in my mind. But each time I take the route I chose that day, each time the Bronco speeds through the red light at 55 mph, the results are the same.

A ninth-century Arabian Sufi story, re-told by Somerset Maugham in 1933 as “The Appointment in Samarra,” concisely depicts man’s futile attempt to outwit death. A merchant’s servant, frightened by Death in a Baghdad market, fled to Samarra. The merchant went to the market and confronted Death, demanding to know why she had scared his servant away. Death denied frightening the servant: “I was astonished to see him in Baghdad, for I had an appointment with him tonight in Samarra.”

In popular culture an “appointment in Samarra” has become synonymous with any inevitable event, one’s fate or destiny. Since that May Saturday in 1989, I’ve sometimes wondered if the corner of Adams and Gaines in Tallahassee, Florida, was for me a personal Samarra, or whether changing one or two small details earlier in the day might also have changed the rest of my life.

God help anyone who has even 1 per cent less ability to function than I have, or who does not have the tremendous experience through work with the state social services department that I have and the doggedness to pursue his own best interests. God help those who have to rely upon the medical and legal community to care for their rights.

Journal, February 21, 1991

The Traumatic Brain Injury (TBI) I suffered in that accident stole from me my memory, some of my senses, whole swatches of personal history, and, eventually, my marriage. And my efforts to reclaim any of myself were frustrated time and again by the medical, insurance and legal establishments.

I hope that by writing this book, I can spare current and future patients much of the insensitivity, frustration, disappointment, and mistreatment I encountered. I also hope that, for me, the act of writing will eliminate those residual traces of bitterness that the passing of time has so far failed to erase.



Jack's Book: A Journey in Progress
Chapter 1:

No More Fun with Dick and Jane

Today I will have Baylor U. Hospital evaluate me for reading speed training to bring myself back to ability that I had before the accident.

Journal, February 21, 1991

I read six-hundred words a minute. That's past-tense, by the way. Today I read six inches an hour, but I'll get back to that. For now, just know that I loved reading and I loved learning. The subjects themselves ranged all over the map; one month I might re-visit Shakespeare's plays or check out some new biographies. The next month could find me immersed in beach reclamation techniques for a potential business investment, or on a flight to Florence for a university course in art history (an experience I enjoyed very much at age 54). Although I received only one official college degree (that one in Mathematics from Duke University), I once calculated that I'd spent enough hours in various subjects to complete the coursework for six PhDs, if my often free-wheeling efforts had been focused.

Now, almost seventeen years since I last read a book, I continue to buy them. Today I read at them. I turn to a page, pencil in hand, and slowly read, on a good day, about six inches of type. The pencil is to circle words, underline phrases, and note, in the margin, the short section's main point. After doing this several times over a period of days, I can go back, look at my marginal notes and read a skeletal summary of the chapter's contents. I have come to view this as an accomplishment, but I still consider the passing of my former reading ability a profound loss.

For many TBI survivors, it's easier to read large type with plenty of white space. If the publishing industry, which already produces large-print editions, would increase the amount of white space, many of us could read more. My regular e-mail correspondents know to leave generous right margins, so I can make my pencil notations on the printouts.

Audio-books are a blessing, and I do listen to them every day. But I can't control the pace of an audio-book. I can turn it on, off, rewind it or fast-forward. I can adjust the volume. But I can't leaf through its pages as I used to do, stopping to wallow in thick passages of rich prose or impatiently skipping paragraphs (or pages) at a time. In other words, I cannot own the book.

With a hard copy, you the reader accept control of the text from its author. You decide where, when and how you will approach it. Perhaps you will curl up with a volume of poetry in front of a crackling fire with a glass of wine, or a mug of fragrant hot chocolate. Your reading will be relaxed. You will savor the music of the words as you do the warm ambience of your environment, and you will wander back and forth through the book at a leisurely pace. No intense poring over lines of highlighted text for you. You are not in the midst of an all-night cram session for college finals.

But you might be in a seaside lounge chair on a hot summer afternoon, sipping an icy can of soda and looking forward to the next salted ocean breeze. Your feet are sandy, your hair is damp, and your attention is riveted to a page in the latest paperback bestseller. For background music, you have the primal rhythm of the tides and the raucous cries of feeding seabirds. You may not be cognizant of the thought, but somewhere inside you is the acknowledgment that it doesn't get much better.

Poetry by the fire, textbook in the library, paperback romance on the sand – you own those books. That is a gift that countless TBI survivors have lost and will never be able to reclaim.

I don't intend to turn this book into a 200-page long pity party. But for those readers who know as little about TBI as I did, I do want to share what living with brain injury is like. Mostly, as with reading comprehension, it's the sum of things lost.

A specific, comprehensive description of TBI is impossible because its faces are legion -- and its numbers are shocking. The Centers for Disease Control and Prevention (CDC) estimates that at least 5.3 million Americans currently live with TBI-induced disabilities, and we add 80,000 to 90,000 to those ranks every year. Since these estimates consider only those TBI survivors admitted to hospitals, they are obviously low. They do not include patients seen in emergency rooms or by private physicians. And they certainly don't include the injured who receive no care at all.

Indulge me if you will and read this sentence aloud: Traumatic brain injury is the leading cause of death and disability in persons under 45. Consider that for a moment. Traumatic brain injury is the leading cause of death and disability in persons under 45. That's a pretty significant piece of information. Why didn't I know that before suffering my own injury? Why didn't you know it?

Here's another: traumatic brain injury affects more Americans than AIDS and breast cancer combined. Combined. Why had I, with my incessant reading, never heard these facts before? Have you?

How could we not know that 1.4 million Americans sustain a TBI every year? That 50,000 die and 235,000 are hospitalized, more than 20 times the number of hospitalizations for spinal cord injury? Why isn't everyone aware of this epidemic? Where are the brain injury telethons? Who is our celebrity spokesperson? What color is our ribbon?

I believe one reason traumatic brain injury is not more widely recognized is that it has no name, or rather, too many names. Think about it – concussion, closed head injury, coma, shaken baby syndrome, diffuse axonal injury, second impact syndrome, coup countrecoup injury, contusion -- all refer to brain injury and are often used interchangeably with TBI. (We will briefly discuss these different types of brain injury in a later chapter.)

Acquired brain injuries (ABIs) further complicate matters, especially when they're subdivided into anoxic and hypoxic injuries. Plus, many experts and organizations refer to all brain injuries as ABIs, with TBI being just one type of ABI. Confused? You should be.

I understand the medical community's need to differentiate between types of brain injuries, but those medically necessary distinctions also diffuse attempts to increase public awareness about brain injury itself. Breast cancer is breast cancer. AIDS is AIDS. Muscular dystrophy is muscular dystrophy. Diabetes is diabetes. Traumatic brain injury is a closed head injury, perhaps a concussion, maybe a coma or all of the above.

The business of raising money for medical research is similar to any corporate marketing venture. Promote a brand image, reinforce it in the public's consciousness, and pay close attention to your product's positioning.

It may sound calculating, but consider this. Breast cancer awareness, aided primarily for the last quarter century by the Susan G. Komen Breast Cancer Foundation, is at an all-time high. Since the foundation began in 1982, it has raised and invested more than $630 million for research, awareness and educational programs. Their universally recognized pink ribbon symbol is an outstanding example of successful corporate identity promotion. Since first used in 1990, the pink ribbon has become as recognizable as the Nike™ swoosh, or even the McDonald's™ golden arches. No one can possibly fault the good work this foundation has done, and I wish them continued success.

However, such noteworthy public awareness campaigns also highlight the vast divide that leaves traumatic brain injury stranded in a wasteland barren of information. Since we have not effectively branded our condition, our campaigns to date have utterly failed to promote the condition's identity & uniqueness. The sad truth: no one knows about us.

Or if they do, they don't know enough; or their information is wrong. For example, all brain injuries are serious, yet the public's perception, especially of concussions, is very different. In many instances, brain injury is a frivolity. Just view a few Saturday morning cartoons and count the falling anvils and exploding heads. Or take in an action movie and watch the hero being battered over the head into unconsciousness, then getting right up and continuing the mission. No side-effects or lingering disabilities for our heroes.

Head injury is arguably the prevailing theme of "America's Funniest Home Videos." Someone or something hits a person on the head, followed by riotous laughter. Then someone or something else hits another person on the head, again followed by riotous laughter. For variety, the victim may walk into something, fall onto something, or fall off something; it does not matter. The laughter doesn't discriminate. Now, here comes Jack, a cantankerous old grouch, to break up the party because he has to ask, "When is the last time you witnessed a slapstick routine involving breast cancer or muscular dystrophy?" If people are accustomed to laughing about head injuries, can they ever take seriously enough the possible consequences of such injuries?

One of the consequences of my brain injury is notes. Everywhere. Small yellow sticky notes, notes on blank strips of adding machine tape, notes on newspaper margins, notes in my appointment book, notes on and around other notes. Without notes to myself, I'd never get anywhere or do anything.

I cannot remember from one minute to the next if I've taken this pill or called that person. When I forget to make a note before placing a phone call, I often find myself embarrassed to admit that I can't remember why I called. Or if someone returns one of my calls, I may have no idea why I called them in the first place. My brain injury unquestionably makes telephoning a more adventurous pastime than it used to be, full of surprises -- some pleasant, some not. But the truth is that without numerous notes to guide me, I could not make it through my day. I once calculated that, since my injury, I've written well over 300,000 notes to myself.

Along with my reading ability and memory, I also lost my executive management function, including planning, problem solving and organizational skills. I could no longer multi-task. Details, logical order, and follow-through all eluded me. Once comfortable directing the activities of many people, I was suddenly challenged by managing myself.

Professionals often use The Tower of Hanoi to help measure this function. Invented in 1883 by the French mathematician Edouard Lucas, the test consists of discs (usually six or eight, but sometimes as few as three) stacked in increasing size on one of three pegs. The object is to move all of the discs to another of the pegs without ever allowing a larger disc on top of a smaller one. You may move only one disc at a time. After my accident, I managed to achieve a whopping 4% out of 100% -- rather ironic for someone with a mathematics degree, someone who always set great store by logic.

I first noticed my loss of executive function when I returned home from the hospital. At the time I was an entrepreneur and a licensed realtor. I also enjoyed directing my personal financial investments. A young college student, Chad, worked in my home office, assisting me with the day-to-day management of my various ventures.

After my week in the hospital, several business items needed immediate attention. Unfortunately, I had no attention to give them. None at all. Had no idea what to do about anything. Chad tried to help, but with my inability to offer any guidance or answer even the simplest question, there was little he could do. I finally let him plant flowers in the back yard just so he could get his hours in while he looked for other employment.

When I came home from the hospital, I entered a strange, new world with awareness and oblivion bound in daily struggles for equal time. One thing I do remember from this period is the cat.

Patsy's daughter had a black cat who'd been abused by previous owners and lost almost all its hair from stress. For reasons never explained (perhaps its own neuroses recognized my anxieties), the cat took to napping on my stomach as I lay in bed, which I did most of the time. The pain from my injuries was severe, and the medication often made me drowsy. The cat would be there when I dozed off, and it would still be there when I opened my eyes. It was strangely comforting, and, at the same time, simply strange. That cat had never shared the bed with Patsy and me. As far as I know, it had never been on the bed at all. But it now spent almost all of its time there, on my stomach, our breathing synchronous when we slept and also when I watched it watch me with its inscrutable cat eyes. I think we were both satisfied with the arrangement – with our suddenly shared inscrutability.

Our house's yard was a typical north Florida mix of tall pines and gnarled oaks with mantles of silver Spanish moss. Typical but quite beautiful. My bedroom windows faced the back yard, and before long, the cat and I became voyeurs of the back-yard wildlife (somewhat like Hitchcock's "Rear Window" without a baleful Raymond Burr across the way).

Patsy had recently hung several bird feeders, which the resident squirrels seemed to interpret as a gauntlet thrown down. Their determination to empty the feeders provided many hours of acrobatic entertainment, although the cat grew a little peevish when he realized he wasn't allowed to join them.

One evening the cat and I left our seed bandits without an audience because I wanted to watch a videotape of "Rainman," the excellent film with Tom Cruise and Dustin Hoffman. About halfway through, I expressed my surprise to Patsy that we hadn't seen it before, because I never missed a Dustin Hoffman film. Patsy gave me a funny look. More uneasy than funny: Patsy gave me an uneasy look.

"We watched it a just a few weeks ago," she said.

"That's curious," I replied. "I don't remember a single scene."

Patsy later told me that when the hospital discharged me, they simply told her that I had a closed head injury. She asked what that meant and the answer was short-term memory loss and disorientation. My name was not entered into Florida's new head injury registration database because the hospital did not yet have procedures in place to do so.

Before the accident, I would have recognized how peculiar it was that I'd taken to the bed so easily. But I don't remember ever wondering about it, or thinking it odd.

Born energetic, I was always on the go. Having suffered from a bi-polar condition for many years, I was well acquainted with the manic stage of that illness, and the extraordinary energy levels it induced. But I also had a natural energy level higher than most; I was one of those people who never seemed to stop, who had two gears – fast and asleep. (How I had ever managed to sit still long enough to read as much as I did is one of my life's unsolved mysteries.) So for me to spend at least eighteen hours a day in bed, voluntarily, should have signaled something was wrong. If Patsy was alarmed she didn't say anything, or, ironically, if she did say anything I don't remember.

When I'd been home about a week, something happened that did alarm both of us. From a letter I drafted to my HMO two years later:

My appointment with Dr. W was about two weeks after the accident, and in going into the office, I was quite agitated, a normal traumatic brain injury sequela.

All I could think of (my speed of thinking is still slowed) was to ask for physical therapy for the severe pain in my neck, for control of interactively dangerous drugs being prescribed by each doctor without regard to other prescriptions or to my allergies, and to alleviate my worry over the so many uncoordinated x-rays and other technical procedures.

When Dr. W appeared, I recall her asking how I was and my rather agitatedly replying "not very well." I think I went on to say that I needed PT for my neck. Dr. W responded that she didn't recommend PT for accident victims. I think my wife asked why not and she said something to the affect, "you just need some time to heal."

I think I became more agitated and angry (behaving as head injured people do). I was told that I was given aspirin in the emergency room and that she knew I was not to have aspirin mixed with my Clinoril. I said that Dr. G prescribed Darvon for pain that had aspirin in it. At this she said that she could not control the prescriptions of specialists and would not be responsible for them.

So I asked who was looking after my medical treatment – coordinating medicines, monitoring how much x-ray I received, treating pain and so forth.

With that she "fired" me, saying that if I had an "emergency" she'd see me. (An "emergency" sat right in front of her.)

So there I was, brain-injured and confused, in pain from head to toe, with no family doctor or, as our HMO refers to them, no primary care physician. Patsy blamed me for being difficult, and warned if I persisted in such behavior no doctor would treat me, and then what would we do?

Inside me, unrecognized at the time, the first seedlings of honest anger began sprouting up through the muck of confusion that had distorted my life. I had no idea what I'd done, and, when Patsy explained, I intuitively realized that my behavior was symptomatic of my injury (a fact that was later validated as I learned more about TBI). My doctor had "fired" me for having a brain injury! (This was to become something of a trend as Dr. W was not the last physician to refuse to treat me because I was "difficult.")

A TBI usually diminishes one's cognitive recognition of other people's feelings.

Journal, March 17, 1991

Even in my agitated state I knew I needed a doctor, so I had Patsy drive me to the HMO's on-site clinic. The receptionist, after determining I did not qualify as an emergency, told me to schedule an appointment so I could see one of their doctors "in just two weeks". I replied that I could not wait two weeks. I was in terrible pain, I said. Also fatigued, depressed, and confused. Something was wrong and I wanted to see a doctor right away.

The receptionist, in a professionally condescending tone of voice, repeated that no doctor would be available for two weeks, and if I was that concerned, I could visit a hospital emergency room. Those seedlings were definitely growing now.

I would not go to an emergency room, I said, because I had just been fired by an HMO-approved physician who had not even completed her examination during my scheduled appointment. I could tell the few other patients in the room were now listening but I didn't care. Further, I stated, I was going to sit down in one of their plastic chairs and not move until a doctor agreed to see me.

And I did. I sat there all afternoon. Patsy had long since left. She was mortified by my behavior and said I could call her (or a taxi) when I was done. Every now and then the receptionist would glance in my direction and quickly look away. Patients fortunate enough to have valid appointments drifted in, either alone or in small clusters, waited a while, saw a doctor and left. I didn't know how many doctors were on duty, but the clinic didn't look that busy to me. Finally, a cleaning crew arrived and began to dust and vacuum around me, for which I obligingly lifted my feet.

The receptionist, who'd already tidied her desk a couple of times, shrugged out of her smock, retrieved her purse from a drawer, and stood staring at me in confusion. Might as well share the wealth I thought, then inwardly smiled at my poor attempt at humor.

At last, with an audible sigh, the receptionist disappeared through a swinging door that led, I assumed, to the hallowed examination chambers. She returned a few moments later with a young, pleasant-faced physician, whom she practically thrust toward me as she swung herself through the exit door. My medical education had begun.