Gray Area: Thinking With a Damaged Brain

A powerful first-person account of living with brain damage after a viral infection — winner of the Creative Nonfiction Award for Best Essay About the Brain.

Gray Area: Thinking With a Damaged Brain

Winner of the Creative Nonfiction Award for Best Essay About the Brain

I used to be able to think. My brain's circuits were all connected and I had spark, a quickness of mind that let me function well in the world. There were no problems with numbers or abstract reasoning; I could find the right word, could hold a thought in mind, match faces with names, converse coherently in crowded hallways, learn new tasks. I had a memory and an intuition that I could trust.

All that changed on December 7, 1988, when I contracted a virus that targeted my brain. A decade later, my cane and odd gait are the most visible evidence of damage. But most of the damage is hidden. My cerebral cortex, the gray matter that M.I.T. neuroscientist Steven Pinker likens to "a large sheet of two-dimensional tissue that has been wadded up to fit inside the spherical skull," has been riddled with tiny perforations. This sheet and the thinking it governs are now porous. Invisible to the naked eye, but readily seen through brain imaging technology, are areas of scar tissue that constrict blood flow. Anatomic holes, the lesions in my gray matter, appear as a scatter of white spots like bubbles or a ghostly pattern of potshots. Their effect is dramatic; I am like the brain-damaged patient described by neuroscientist V.S. Ramachandran in his book Phantoms in the Brain: "Parts of her had forever vanished, lost in patches of permanently atrophied brain tissue." More hidden still are lesions in my Self, fissures in the thought process that result from this damage to my brain. When the brain changes, the mind changes — these lesions have altered who I am.

"When a disease process hits the brain," writes Dartmouth psychiatry professor Michael Gazzaniga in Mind Matters, "the loss of nerve cells is easy to detect." Neurologists have a host of clinical tests that let them observe what a brain-damaged patient can and cannot do. They stroke his sole to test for a spinal reflex known as Babinski's sign or have him stand with feet together and eyes closed to see if the ability to maintain posture is compromised. They ask him to repeat a set of seven random digits forward and four in reverse order, to spell world backwards, to remember three specific words such as barn and handsome and job after a spell of unrelated conversation. A new laboratory technique, positron emission tomography, uses radioactively labeled oxygen or glucose that essentially lights up specific and different areas of the brain being used when a person speaks words or sees words or hears words, revealing the organic location for areas of behavioral malfunction. Another new technique, functional magnetic resonance imaging, allows increases in brain blood flow generated by certain actions to be measured. The resulting computer-generated pictures, eerily colorful relief maps of the brain's lunar topography, pinpoint hidden damage zones.

But I do not need a sophisticated and expensive high-tech test to know what my damaged brain looks like. People living with such injuries know intimately that things are awry. They see it in activities of daily living, in the way simple tasks become unmanageable. This morning, preparing oatmeal for my wife, Beverly, I carefully measured out one-third cup of oats and poured them onto the pan's lid rather than into the bowl. In its absence, a reliably functioning brain is something I can almost feel viscerally. The zip of connection, the shock of axon-to-axon information flow across a synapse, is not simply a textbook affair for me. Sometimes I see my brain as a scalded pudding, with fluky dark spots here and there through its dense layers and small scoops missing. Sometimes I see it as an eviscerated old TV console, wires all disconnected and misconnected, tubes blown, dust in the crevices.

Some of this personal, low-tech evidence is apparent in basic functions like walking, which for me requires intense concentration, as does maintaining balance and even breathing if I am tired. It is apparent in activities requiring the processing of certain fundamental information. For example, no matter how many times I have been shown how to do it, I cannot assemble our vacuum cleaner or our poultry shears or the attachments for our hand-cranked pasta maker. At my writing desk, I finish a note and place the pen in my half-full mug of tea rather than in its holder, which quite obviously teems with other pens. I struggle to figure out how a pillow goes into a pillowcase. I cannot properly adjust Beverly's stereo receiver in order to listen to the radio; it has been and remains useful to me only in its present setting as a CD player. These are all public, easily discernible malfunctions.

When the brain changes, the mind changes — these lesions have altered who I am.

However, it is in the utterly private sphere that I most acutely experience how changed I am. Ramachandran compares this to harboring a zombie, playing host to a completely nonconscious being somewhere inside yourself. For me, being brain-damaged also has a physical, conscious component. Alone with my ideas and dreams and feelings, turned inward by the isolation and timelessness of chronic illness, I face a kind of ongoing mental vertigo in which thoughts teeter and topple into those fissures of cognition I mentioned earlier. I lose my way. I spend a lot of time staring into space, probably with my jaw drooping, as my concentration fragments and my focus dissolves. Thought itself has become a gray area, a matter of blurred edges and lost distinctions, with little that is sharp about it. This is not the way I used to be.

In their fascinating study, Brain Repair, an international trio of neuroscientists — Donald G. Stein from America, Simon Brailowsky from Mexico and Bruno Will from France — report that after injury "both cortical and subcortical structures undergo dramatic changes in the pattern of blood flow and neural activity, even those structures that do not appear to be directly or primarily connected with the zone of injury." From this observation, they conclude that "the entire brain — not just the region around the area of damage — reorganizes in response to brain injury." The implications of this are staggering; my entire brain, the organ by which my very consciousness is controlled, was reorganized one day ten years ago. I went to sleep here and woke up there; the place looked the same, but nothing in it worked the way it used to.

If Descartes was correct, and to Think is to Be, then what happens when I cannot think, or at least cannot think as I did, cannot think well enough to function in a job or in the world? Who am I?

You should hear me talk. I often come to a complete stop in midsentence, unable to find a word I need, and this silence is an apt reflection of the impulse blockage occurring in my brain. Sitting next to Beverly as she drives our pickup truck through Portland traffic at 6 p.m., I say, "We should have gone for pizza to avoid this blood …" and cannot go on. I hear myself; I know I was about to say "blood tower traffic" instead of "rush hour traffic." Or I manifest staggered speech patterns — which feels like speaking with a limp — as I attempt to locate an elusive word, "I went to the … hospital yesterday for some … tests because my head … hurt." Or I blunder on, consumed by a feeling that something is going wrong, as when I put fresh grounds into the empty carafe instead of the filter basket on my coffee maker, put eye drops in my nose or spray the cleaning mist into my face instead of onto the shower walls. So at the dinner table I might say "Pass the sawdust" instead of "Pass the rice," knowing even as it happens that I am saying something inappropriate. I might start a conversation about "Winston Salem's new CD" instead of Wynton Marsalis's or announce that "the shore is breaking" when I mean to say "the shower is leaking." There is nothing smooth or unified anymore about the process by which I communicate; it is disintegrated and unpredictably awkward. My brain has suddenly become like an old man's. Neurologist David Goldblatt has developed a table which correlates cognitive decline in age-associated memory impairment and traumatic brain injury, and the parallels are remarkable. Not gradually, the way such changes occur naturally, but overnight, I was geezered.

It is not just about words. I am also dyscalculic, struggling with the math required to halve a recipe or to figure out how many more pages are left in a book I'm reading. If we are on East 82nd and Third Avenue in Manhattan, staying with my childhood friend Larry Salander for the week, it is very difficult for me to compute how far away the Gotham Book Mart is over on West 47th between Fifth and Sixth, though I spent much of my childhood in the city.

At home is one thing; when I perform these gaffes in public, the effect is often humiliating. I can be a spectacle. In a music store last fall, I was seeking an instruction book for Beverly, who wanted to relearn how to play her old recorder. She informed me that there were several kinds of recorders; it was important to buy exactly the right category of book since instructions for a soprano recorder would do her no good while learning on an alto. I made my way up to the counter and nodded when the saleswoman asked what I wanted. Nothing came out of my mouth, but I did manage to gesture over my right shoulder like an umpire signaling an out. I knew I was in trouble, but forged ahead anyway, saying, "Where are the books for sombrero reporters?" Last summer in Manhattan, I routinely exited the subway stations and led Beverly in the wrong direction, no matter which way we intended to go. She kept saying things like, "I think west is that way, sweetie," while I confidently and mistakenly headed east, into the glare of the morning sun, or, "Isn't that the river?" as I led her away from our riverside destination.

Deficits imply losses; I have to know how to see them as gains.

In many important respects, then, I have already gotten better. I continue to learn new ways of living with a damaged brain. I continue to make progress, to avenge the insult, to see my way around the gray area. But no, I am not going to be the man I was. In this, I am hardly alone.

About the Author

Floyd Skloot's memoir, In the Shadow of Memory (Nebraska, 2003), won the PEN Center USA Literary Award.

For more information, please visit: www.floydskloot.com