The spatial reasoning that supported my executive functioning was compromised so that plans of any sort of complexity were beyond me. It took a month of intense painful daily sessions for example--I really pushed myself--to come up with a simple paper calendar that I could use in a rudimentary way. Concepts like "next Thursday at 5:00 PM" were often beyond my understanding.
At times when my visual system was fatigued, I was unable to create clear goals for my body to follow, and I'd lose the ability to walk, to get up out of a chair, or move my hands. I several times almost froze to death when trying to walk to my car during the wintertime: my body just stopped moving altogether.
cover art, design by Spencer Kimble
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JB: Yikes! Scary.
CE: Shopping was sometimes overwhelming because of the visual chaos in the store aisles.
I often could not follow what people were saying--I couldn't process the words fast enough to keep up. In general under brain stress, when I just forced myself to keep processing information, such as when I needed to get grading done for a class, I would deteriorate into increasingly slow motion. My eyes and hands would move at maybe one twentieth of normal speed.
Some tasks were particularly hard. For example the grading of exams was extremely difficult because it required intense pattern-matching (comparing answers to the answer key), critical reading, spatial rotations (of the exam papers themselves) and the making of complex decisions about how to grade each answer--each of which was independently difficult. It might take me ten minutes to grade each of the first three exams, but up to two hours of brutally intense work for each of the last few exams. It would take me several weeks to recover from the grading of just one set of exams. I hated grading! Ouch!
There were several saving grace points without which I would have been much worse off, so I was lucky in this way. First, I was fanatically careful about not driving when I was impaired. But as long as I was OK when starting out, the smooth motion along the periphery of my visual field was soothing and actually improved my brain state, if anything. So I could drive. Second, I had a sort of emergency mode that I could call on if I really needed to. This was only good for a short time, and the cognitive toll was very high, but it meant that I had a safety buffer. This allowed me a great many activities that otherwise would not have been possible: I could go to meetings at work, and could take my kids traveling with me. Third, my disposition is just naturally upbeat, and I am used to solving problems as a way of life--both professionally and personally, so despite the challenges, I was OK with being in problem-solving mode all day long.
JB: I can't even imagine living like that and "knowing" that there was no way to get your old life back. You say you have a naturally upbeat personality. That's fortunate, indeed, but it's quite easy to understand how formerly high-functioning people with this constellation of symptoms could not only give up but even take their own lives out of sheer frustration and depression. Did that thought ever cross your mind?
CE: Thank you for asking about this troublesome topic. In the last four days, I heard from parents about three more suicides as a result of concussion, which is disturbing. In my own case, I was fortunate that I never once thought of it. It is my understanding that many concussives have emotional difficulties, and also suffer from depression over their circumstances. I never had that burden. I felt periods of intense stress as I tried to keep up with my life, but that is a very different problem.
The best short answer, in my case, was that I was just too busy getting through every hour, and sometimes every minute of each day to consider such options. And, importantly, I had five children, and others, so completely dependent on me being a breadwinner, a father, husband, son, and son-in-law that it would have been out of the question anyway. Once I started playing tai chi regularly, I could always transform even a horrible day into a really good and interesting horrible day--so I had a secret weapon. I just learned to watch the chi move, whatever it might be.
As I've pondered in the book, I have to wonder about the following: Concussion damage can be so extremely alienating. I felt non-human, and I know that many others also felt this way. It is maybe not such a big step to move from there--wherein the self is already just gone--to actual physical death of the broken down body that can no longer support being human anyway. Perhaps for many, it just doesn't seem to matter much. My heart goes out to them and their families.
JB: My heart goes out to them, too. Let's pause here, Clark. When we come back for the final half of our interview, we'll discuss how you recovered your health, despite all the medical naysaying. Readers, don't miss it!
Part two of this interview