Spontaneous events in my life created a greater emotional impact and tended to override my planned events. Colors of seafood, movements of fish, and the art of wine labels could evoke a stimulating diversion from the dull and inanimate world of lists. Interactions and objects that stimulated my senses usually altered my direction of thought and broke my focus. I literally became “listless” when under the influence of sensory details—something of a sensory attack.
Gina and Dr. Hall had told me that the executive functioning part of my brain was still recovering. Consequently, higher-order thinking, such as sequencing and prioritizing, problem solving and multitasking, did not operate as they should have. With the added deficits in attention processing and disruptions of short-term memory, the milieu in which I tried to order my thoughts became a torrent of distractibility and hesitation. The making of lists helped me accomplish basic everyday tasks. They helped me focus and maintain intentionality in everything I did.
At the top of one of my earliest lists, Cher had written in bold letters, Kiss Wife. No list—no action. In the first year of my stroke, I often felt like I was living in a never-ending labyrinth of confusing choices that overwhelmed my ability to discern the important from the unimportant. A crisis of apparent urgency or the impact of sensory details could derail an ordered thought or a detailed plan within seconds. I felt trapped in a cartoon strip where five or six frames told a story, but I could never make the connections between frames, and I could never completely understand the point or get the joke.
Cher had also told me I thought in scatter plots because of the type of stroke I had. She was right. I was always connecting the dots in my brain, but in the process I made chaos out of order. When I discovered something I needed to do, I stopped mid-stride from what I was doing and changed directions immediately. When I changed directions, I often forgot what I had been doing originally. I went blank—tabula rasa. I tapped my head to jar information loose that hid among the synapses of my brain. Information was in there—I just had to find it. It was like a cognitive treasure hunt. I found a clue, changed directions to find the next clue, and then jumped to the next one and then the next. I usually forgot the original clue, then had to start over from the beginning—changing directions one more time.
To help me compensate, my therapists used list making to keep on track, primarily with first-order thinking and daily tasks. I perfected the strategy as months of therapy accumulated. I got so good at it I tried to make lists in my head, from memory, spontaneously. Then, after a round of missed appointments or multiple runs to the grocery store for the same forgotten item, I would repent and go back to my list-making basics. Collin would remind me that I needed the lists to stay on task.
“What’s on your list for today,” she would prod.
If I hadn’t made one, I would say, “I don’t know.”
“Well, I hope you get it all done, then,” she replied, with just enough jab to make me feel guilty.
“I’m trying to work without a list,” I would say.
“And how’s that working?”
There was no way out and no way to win. I simply had to use a list, on paper or in my cell phone. No list—no action.
—
I hated lists. They reminded me of bad friends who never called unless they needed help moving furniture. Lists reminded me of litmus paper that turned red for positive or blue for negative. My lists were litmus paper; and they always turned red for brain damage. They nagged that my abilities as a doctor and a soldier had been effaced by a stroke and that I was incapable of thinking with just the pure cognitive and imaginative power of my brain. Lists filled me with the desire for things not on the list.
More than anything else, lists reminded me that I needed a list. The reminder used to piss me off. When that happened I usually wrote my lists hard and fast. I tensed my shoulders and jaw. My breathing turned shallow and choppy. Sometimes I scribbled unintelligible words, a cipher for the things I was unable to do on my own. I often relegated lists to my pocket or left them on the kitchen counter, isolated, unattended, and impotent, unable to insult my intelligence and the skills I used to possess. If I was really in a rebellious mood, I crumpled a list and tossed it in the trash. Occasionally, I tore a list into pieces and threw it in the street—a sort of therapeutic littering.
I knew that I had to move forward if I was to accomplish anything, so I relented and made another list, and then yet another. I filled them with simple things that had to be done just to survive the day. I filled them with the complex things I considered important to me, and then I worked them hard, the simple and the complex—like a doctor and soldier at war. I kept moving. At times the movement was forward, then backward, then forward again. It was never linear. But I learned to adapt to the movement no matter how helter-skelter, no matter how insignificant the days may have seemed.
On good days I didn’t need a list at all. Without prompting, I thought and acted in that wild, intoxicating bliss of spontaneity. I phoned my kids and told them how good it felt to be getting smarter, faster, stronger, to be learning new things. I talked with my wife, asked her questions about a scene in a movie; I reminisced about something we did when we were first married. I kissed her just because I could. She kissed me back, smiled, and caressed my arm. She reminded me that love didn’t need a list. And in the strength of those moments, I crossed from a world of checked-box therapy into a world where spontaneous ideas flowed outside the lines like the crayon art of school-age children. That movement invigorated me, saved me, and reminded me who I really was.
As a natural consequence of improvement in therapy, I wanted to recapture the ability to think like I used to when I practiced medicine. That desire created a major sticking point in therapy. I persistently looked back to the kind of thinking I had done as a physician. It was facile, quick, and confident. I prided myself in being able to forge order out of chaos. I acted with decisiveness and boldness in emergency and combat medicine. After my stroke, that all changed. I never regained the level of cognitive skill I had possessed in medicine, but I wanted to recover at least some ability to think with higher-order logic. Thinking only at the basic, daily activities level bored me and frustrated me. I used to get angry with myself for failing to understand conversations with more than one person at a time. If I read Scientific American or Smithsonian magazine, I just looked at the pictures and captions because the text was too detailed. I got caught in loops of sentences because I had trouble extracting meaning from analogies or metaphors. I tapped my forehead to help me think, as if the tapping could loosen a dangling word or free a thought.
My thinking resembled a nonlinear, random pattern of information. When I tried to understand the deeper meanings embedded within a story or a conversation or a complex problem, my thoughts became even more scattered and unpredictable. I could only see and think about things one frame at a time, but the frames didn’t necessarily connect. My thoughts became fragmented, taking me in directions that had no apparent coherence or connection with reality.
In conversation and speech, I mispronounced words. Medical appointment could come out as “medcala appoint.” Brain morphed into “bainir.” My brain and tongue felt like they weren’t connected at times. If I initiated a conversation, I could sound fairly smart; but if somebody asked me questions about medicine, or about a conversation I had the day before, or even an hour before, I faltered. I couldn’t recall enough information to form an abstract thought and I couldn’t process information quickly enough to make an intelligent-sounding response. Army doctors at Fort Knox, in their final assessment of my stroke status, said I didn’t have the cognitive ability to process critical information. They were right. I had difficulty thinking. With respect to memory, on some days I couldn’t recall Gina’s name or Dr. Hall’s name, so I asked the receptionist so I wouldn’t be embarrassed. I feared losing memories of Collin and my children. Secretly, I contemplated getting their names tattooed on the sides of my fingers.
&nb
sp; In the process of moving from basic to higher-order cognitive functioning, Gina and Dr. Hall modified my therapeutic sessions to include routines that emphasized complex and abstract thinking, executive functioning, and metacognitive processing. Much of cognitive therapy mystified me and I didn’t fully understand the logic of brain exercises and repetitive tasks. It wasn’t always clear how puzzles and sequencing exercises would eventually translate into complex thinking. Some of my sessions focused more on encouraging me to stay on track to hit a very fuzzy target—to be able to think about thinking, metacognitive processing. I felt like a stranger to myself and to Collin, though less to my kids, who didn’t see the day-to-day impact of rebuilding cognitive skills. Gina or Dr. Hall had no specific or exclusive brain exercises that led to specific gains in metacognitive function. To me, the therapy tended toward the nebulous side of medicine. I didn’t see any real progress from my perspective, yet Gina and Dr. Hall saw incremental improvements in my thinking and charted tiny movements in progress, so I kept going back to “brain school,” as I used to call it, week after week, month after month.
My new therapy plan began in January 2009 and would continue as long as needed. The first steps used a series of prerecorded listening exercises in a program called attention process training. The goal was to increase my skills at focusing and processing more complex verbal instructions. Gina monitored my progress as I listened and wrote my answers. In any given session, she usually had to stop the tape one or two times because I got confused by the instructions or forgot them while I responded. The instructions included compound commands that raised the level of complexity tenfold, or at least that’s how it seemed. The male voice on the tape droned on without inflection—a therapy robot: “Select from the card deck the red, even numbers only, then add them.” Those simple instructions I followed, but the compound instructions lost me. “Select from the card deck the red, odd numbers, but only if the number is red and the word for the number is green. Do not select the red odd numbers if the number and word for the number are both red.” I got confused trying to remember the permutations of colors and numbers or colors and words. The exercise required not only a great deal of attention but also relatively quick memory formation and recall. The slightest distraction in the exam room—the squeaking of a chair, the tick of a clock, a wave of Gina’s hair—and I would lose my concentration and muff the exercise. In one session, a fly buzzing around the room landed on my head and changed my focus for the entire session.
When I first started the program, I wanted to kick myself when I left Gina’s office. I knew she was giving me exercises meant to push my cognitive recovery, but they always made me feel stupid and inadequate. Gina noticed that and spent time reminding me that our goal was slow, incremental progress, not an overnight recovery. We pushed for weeks at a time, and then she changed the exercises to give me a “brain break.”
We worked on attention process training and reading concurrently. I read so slowly that I got distracted by extraneous thoughts and memories. Certain words—for example, run, fight, weapon, and desert—triggered thoughts of war and Iraq. Less obvious triggers included words like oil, watch, and water. Oil reminded me of the burning oil fields in southern Iraq; watch triggered the images of my aviator friend killed in action; and water brought back memories of two-liter water bottles delivered on pallets by C-130s. The wanderings led me from the context of the story I was reading in 2008 to the context of the war I had fought from 2003 to 2006. I had no clue how to control trigger words other than to just keep reading and hoping that, over time, the power of triggers might dissipate.
In addition to trigger words, environmental distractions often derailed my reading. If I read at a coffee shop, typical noises in the restaurant caught my attention or startled me. Conversations from friends pulled me in and I would lay my book aside and join them.
In therapy, our metacognitive approach to solving reading issues involved discovering the root causes and proposing solutions. Gina didn’t tell me what the corrective actions or strategies should be, but instead asked me to think about them until the next session.
“As you think about your reading,” she said, “try to think about different things you could do to control the environment of your reading.”
That extra logical task required me to perform a deeper analysis; it meant I had to think about thinking, to think about the variable components of a problem and its solutions. It was something akin to contingency planning in the military; it required multifocal thinking.
—
In addition to distractions, we identified two specific reading problems, word substitution and sentence comprehension. When I read, I frequently substituted one word for another or one letter for another. Sometimes I dropped complete words or partial words from a sentence so it might read something like “Jack a Jill up hill to pail water.” The word-chopping thing happened every time I read. At times it was so severe that I got lost in meaninglessness and would stop reading. At first I used to blame the authors, thinking they just wrote terrible sentences. I grew frustrated and wanted to pull my hair, but instead I held open books up to my forehead, trying to force my brain to understand sentences, as if osmosis might transfer the meanings directly from the pages. When that didn’t work, I tapped a book against the sides of my head. That didn’t work either.
Books became my enemies. I would start one book, put it away, and then start another. I used to have five or more books open and scattered around the house at any given time, each with a bookmark marking the places where I was lost. Sometimes I left them unread for weeks at a time, then tried to pick up where I had left off. I always had to start over from the beginning. I made notes in my journal about being stuck in sentences and lost in fragments, about being tired and wanting my brain back the way it was. Gina and Dr. Hall discussed that with me and said that the fact that I was even able to start making notes showed I was using higher-order thinking. I didn’t know about that, but what I did know was that reading became tedious and painful. In my mind there was no solution. Gina asked me to continue reading and taking notes, not just about meanings and characters, but about process and structure.
On February 14, 2009, I finished reading The Story and Its Writer, the short story anthology I had started with Cher in August 2007. I wrote the date inside the front cover and celebrated by skimming the pages and rereading a six-paragraph short story by Sandra Cisneros, “My Name.” When I read it originally, I responded to it by writing in my therapy journal about my own name, with respect to my title, “MD,” and how its meaning had changed since my stroke. From a literary point of view, my writing was abysmal. Cher told me I had used another person’s literary voice as my own and it didn’t work to reveal my own personal insights about identity and loss. I was cheating, in a sense. I needed to use my own voice. It was my first try at writing something in depth.
When I reread “My Name” on the day I finished the anthology, I read it at least five times. I studied it. It portrayed what I had been grappling with in therapy; like Cisneros, I wanted a new name that would reflect the real me. Her writing came from the heart of a multicultural perspective and it made me think in a different way about issues other than recovery. As I read and studied her six short paragraphs, I wished I could write like her. In the space of a single page, she opened a cultural door that invited readers to explore the cultural and social meanings embedded in a name—her name. I wondered how I could ever do the same. I decided I could not. If I did write, I would have to discover my own voice, as Cher had said. At the time, more than two years later, I had difficulty retaining my own identity as a stroke survivor let alone a distinctive voice. Gina and I talked about the reading in a session. She said I was gaining insight in my readings. I wasn’t sure. She told me to keep reading, keep thinking, keep working the plan.
For Christmas in 2008, Darren had given me the first Hunger Games book by Suzanne Collins.
“Dad, I think you’ll like this book,” he sa
id when he gave it to me.
He knew I was having difficulty reading and he thought the book would be easy enough to understand.
I thanked him and added it to my pile of books. In April, after Easter, I decided to read it. I knew it was a young adult dystopian novel and that was not really my genre, but I had enjoyed science fiction in high school and had a personal reading rule: if somebody gave me a book, I read it. I looked up The Hunger Games on several websites. It was referred to as a grade level 5.3 book. Grade level 5.3. The number stuck. I thought I was certainly capable. I started the book in my recliner next to the fireplace on a Saturday evening after dinner. I was still reading at 10:00 p.m.
It took a week to read the entire book. I put it down between readings, picked it up where I had left off. I didn’t have to retrace any chapters because I could remember the plot and the characters. The story swept me in by its easy readability and its clean, tight prose. And the plot kept me thinking: What’s next? What’s next? I was so excited. I had read a book in a week and retained enough to repeat the story to Collin and then to Gina in therapy. Grade level 5.3. That was my level of comprehension. My reading speed was slower than my comprehension but I didn’t care. I could think! I could read! Gina said my progress was remarkable.
The following week I discussed the epic event with Dr. Hall and he suggested it showed my improvement and that perhaps it was time to consider other vocational options for my future. I was retired from the military and from medicine, so I didn’t fully understand what he meant by “other options.”
“You mean like getting a job?” I asked.
“Not exactly. Something more like going back to school.”
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