The Ghost in My Brain

by Clark Elliott

  I have remarkably regressed, although the “echo” of the magic glasses remains. I find myself anxious, afraid about an uncertain future. By the end of the day, and in the morning, after sleeping, I am just worn out, in the old, bad way. It is just so much work, again, to be alive.

  I am starting to feel non-human again. I am sad that I can only see “locally” and have lost my global, magic, bigger-picture, overview vision. I feel disconnected from the universe and lonely.

  Small tasks are harder for me to initiate (grading papers, deciding what to do today, working on Donalee’s exercises). I am avoiding them because they are just “too hard.”

  I cannot hear in the same way. I cannot make sense of the sound picture in the world around me.

  I am anxious, as though my eyes, and my attention, are darting around.

  I am fearfully avoiding conflicts, because of my weakened state.

  I cannot get “home,” and I am not sure where I am.

  May 7th: I continue to feel the loss of my “magic glasses.”

  My reading has changed back. I am hearing the words in my head as I read and this slows me down and reduces comprehension. It is less fun to read, more work.

  My handwriting has regressed. It is noticeably more work to write neatly. It is as though I am in too much of a hurry, and my body is cramped up from brain to shoulder to arm to hand, making it an effort to follow through on writing out the full sweep of letters.

  . . . worn out just trying to figure out what to do next . . . hard to keep doing whatever it is that I am engaged in instead of thinking about doing something else . . . have to keep a hand on the wall for balance . . . struggle to remain calm instead of anxious . . . don’t look forward to tasks because they all seem to involve pain of some kind . . . my head hurts often . . . I am dreaming more about frustrating events . . . waking up early with anxiety and not going back to sleep . . .

  I am inappropriately and over-vigilantly concerned about the well-being of others around me: Erin at the baby-sitter’s, Qianwei in China, Paul’s math, Lucy’s friends, Nell’s schedule, Peter all the time . . .

  May 9th: I had more anxious dreams that did not resolve: my dreams are again not productive. I’ve lost the NSEW grid that connects them to my life.

  As a scientist, I’ve had to allow the unlikely, but possible chance that my impairment and recovery were psychosomatic in nature, and that even when I lost my glasses I was simply psychosomatically re-creating the original symptoms of my so-called brain damage. However, given the steady re-onset of the original symptoms over the course of three days, and the complete lack of any psychological charge one way or the other, and the nature of the experience, this becomes ever more emphatically unlikely. And how likely is it that I could psychosomatically affect my dreams? I also had the evidence of the visually triggered seizures, which I could not reproduce on my own. Much more reasonable an explanation is that the light entering my retinas is no longer being rerouted, and visual signals are no longer traveling along the healthy pathways, thus re-triggering my brain dysfunction.

  This also lays to rest the idea that my recovery was a coincidence, and I was going to spontaneously get better at this point in my life (eight years later!) on my own.

  Besides the re-onset of all of the original symptoms, my over-arching experience is the stark realization of how extremely difficult just getting through the day has become. I am again exhausted by the simplest tasks. I have a sense of being “done for the day” before the first hour has passed.

  May 9th, in the afternoon: [I had been without any brain glasses for fifty-two hours at this point.] I put on my new Phase III brain glasses, and within ten minutes have started feeling better. In an hour I am mostly back to normal. Such a short time for me to again have my vision into this alternate universe!

  What a relief . . .

  I feel at peace all over my body. This is not a drugged feeling, but rather just a deep quiet normal-ness with good feeling in it. My mind is quiet. I feel quietly happy. I am looking forward to the rest of my life.

  Despite the bad start to the day I am now feeling physically energetic, like a rocket heading forward.

  I came home from Zelinsky’s and played Beatles songs on the piano (by ear) with great enthusiasm. I am distinctly less chaotic in my musical thinking. I also have a strong feeling of being so internally quiet that I can now better hear the joy actually present in the musical fabric itself.

  These Phase III glasses, like the Phase II glasses, also emphasize the right part of my world, but the delineation lines of the magic world are significantly less well-defined. The Phase I glasses had a very distinct left pie slice. The Phase II glasses had a clear right-ish pie slice, but while these Phase III glasses are also to the right I cannot feel, or describe, the demarcation of the space very well. They are also broader from top to bottom—a wider (cognitive) vertical band.

  Additionally, they feel unbalanced from one eye to the other, in an unsettling and challenging way: Zelinsky has made it clear to me that she wants to make some very specific changes in my brain, and that my brain is now ready to have her make them. I suppose these Phase III glasses will achieve the results, but it is clear I am going to have to work at it.

  As a professor, I recognized a rare research opportunity: given what had happened when I lost my glasses, I suggested to both Zelinsky and Markus that I stop wearing my glasses for a while, and have them take careful, possibly daily measurements and assess the changes that were taking place during my regression—sort of a temporary Flowers for Algernon case study. Each of them was independently aghast, considering me essentially out of my mind for being willing to take such a risk. They are, first and foremost, clinicians in the business of making individual people better, and their ethics forbid them from taking a chance with one of their patients in the interests of research, however tempted they might be as scientists. With the thought of providing what might be extremely valuable research data, I considered forcing the issue by making a unilateral decision to present the opportunity to them if they wished to record the data (that is, I would stop wearing the glasses on my own), but in the end decided I could neither go against their wishes nor take a chance with my brain because of my responsibilities as a parent. But I was tempted!*

  It was very hard for me to adjust to the Phase III glasses. My intuition is that it was because of the loss of the prisms. Wearing the new glasses was unsettling, and with them I felt a change in my personality. From my notes:

  May 22nd, 2008: I find myself dreamier in very specific ways. It is harder for me to attend to narratives when people are talking. It is not so much that I drift off, but rather that I pay attention to other parts of them—who they are, what they look like, and sound like—rather than just what they are saying.

  I am more annoyed by noises such as lawn-mowers, refrigerators, a noisy computer fan . . . I have less sense of my left and right magical hearing spaces . . .

  I got into minor social tussles with two difficult people. I was clearly in the right in both cases, and also very reasonable. However, I noticed that I was more reactive, and concerned about “fairness,” than I would have been with the Phase II glasses. Wearing those I would have been calmer, and would have just patiently listened to the unfair things being said, without responding. While the issues were each resolved quickly, and amicably, I was disappointed: first that the tussles occurred at all, and second, that I was bothered about it when they did.

  My handwriting has deteriorated again. While it is possible for me to force myself to write neatly, as with the Phase II glasses, it is not natural. I am again dropping pieces of individual letters, taking shortcuts in my cursive writing. I am in a hurry when I write, and my muscles aren’t working in the same way.

  I am quite productive. I’ve gotten much done this week. I’ve been able to prioritize, and then calmly choose victim tasks that I won’t be able to get to, wi
thout worrying about them. I have a strong sense of intentionality and choice.

  May 29th: I’ve experienced a natural and striking increase in my ability to find keys on the piano and to play simple pieces by ear in twelve different keys. It is significantly easier for me to “see” the notes in relation to one another as I pick out tunes, counterpoint, and chords. I am more easily absorbing the visual patterns of the keys, and the sounds are more accurately linked to those patterns.

  Because I could see better with the Phase III glasses, I tended to wear them at night while driving.

  From the beginning I found the Phase III glasses “unbalanced,” as though one eye was seeing the world differently from the other. Each time I changed my focus from near to far, or vice versa, there was a lag before my eyes agreed on what they were seeing.

  I picked up my Phase II replacement glasses on May 27th. They were immediately more comfortable, and because there were so many end-of-the-school-year demands on me, I mostly went back to wearing them, though I still wore my Phase III glasses when driving at night. I sent a note to Zelinsky explaining, but she verified that this was the correct prescription. She suggested that I continue to trade off between the two pairs until I could make the transition. I had work to do. The timetable was up to me.

  In late June 2008 I began a regimen of wearing the Phase III glasses a few hours a day, and the Phase II glasses the rest of the time. This lasted for more than a year. Then, during an extended August 2009 working vacation at my mother’s rural property in northern California, where the demands on me were lessened, I put the Phase II glasses away and forced myself to wear the Phase III glasses for long periods each day.

  August 26th, 2009: During this whole month past the Phase III glasses have continued to feel “unbalanced.” I have to work hard at wearing them. Over time, however, I have grown to tolerate them. When I tried going back to my Phase II glasses a few days ago I found that it was like regressing from being a responsible adult back into some sort of adolescence: although it has been painful to move on to a more profound state of recovery, I no longer find it attractive to go back. Time to grow up!

  After that month in California I was able to wear the Phase III glasses all the time for several months. I was never comfortable with them and how they presented the external world to me, but I was happy with what they did for me internally. My cognition was again further improved.

  Zelinsky later explained to me that my lopsided feeling was because, in fact, the targets in the two eyes were sharpened in different ways. One was magnified slightly more than was the other, intentionally forcing my brain to readjust the balance between one eye and the other every time I changed the near/far focus of my gaze.

  On October 15th, 2009, after fifteen months with the Phase III glasses, I returned to the Mind-Eye Connection and was tested for my Phase IV glasses.

  From 10:15 until 11:00 A.M., I went through preliminary review and testing with Martha. I filled her in on some of the observations I’d been making in my diary. “On the good side,” I said, “I experience a general state of joy, peacefulness, and calm well-being. I feel much less need for vigilance. I have more choice in what I attend to. My house is significantly more ordered.

  “On maybe the bad side, but also maybe still good, I’ll report two strange things: First, the quality of my listening to people is different. When people are talking to me about themselves, I am noticeably less interested in the story—that is, the ‘drama’—and in the context. Instead I find myself paying close attention to the person speaking, and the qualities of who they are as they speak. But I am no longer compelled to become the story with them.

  “This might be bad in that I am just a less compassionate person. It might be good in that I can choose to be compassionate, but am not driven to be. I have more choice. It might be good that I’m attending more to the actual people, and their immediate experiences, than to the stories they are telling, which might even be a better form of compassion.”

  Martha listened carefully to what I was saying, and wrote it down. I went on: “Second, I am less responsive to appropriate stress which is, correctly, prompting me to get some job done—I just don’t care as much and am more accepting of possible negative consequences.”

  Martha, who seemed to have heard this before from other patients, asked, “Is it like this: People are coming over, and you get your whole house in order, except that you don’t get the front hall cleaned? You just don’t quite get to everything, but you don’t worry about it and enjoy your guests anyway?”

  “Yes!” I said. “That’s right.”

  Then I extended the example. “Actually, it’s more like the first time they come over the front hall isn’t clean, and that’s not so great. But my head is less cluttered with things I’m worried about. I have a little bit more time and energy each day, and, as a consequence, over time, I have more time to keep my house clean. In a few months, I am not only not stressed about every last thing, but my house is also already clean when guests come over. I can’t count on myself to achieve every last goal anymore, but in the end I seem to be coming out ahead.”

  Martha continued to write everything down. It was all data to Zelinsky, and also to her then-associate, Lisa Kowar, O.D. How gratifying it was to have people note the actual details of my experience before deciding how to proceed!

  Martha then completed my testing with the Padula Visual Midline Shift test, the H-pursuit test, the Visual Localization Test, and so on.

  From 11:00 A.M. until noon I saw the wonderful Dr. Kowar, who carefully reviewed Martha’s notes and then performed her own extensive testing with the phoropter, with single-eye occlusions, with eye charts, and so on. She focused extensively on my binocular vision, and on fixation disparity. We tried many different lenses. She wrote up her results and passed these on to Zelinsky.

  From noon until 12:45 P.M. I met with Zelinsky in her examination room.

  In looking over the tests that Martha had performed, and the notes she had taken, Zelinsky said, “You’re doing very well. Your brain has changed. It’s adjusting.” She referred to my feelings of contentment and peace. “However, you’re no longer performing optimally on the Z-Bell Test, or on the Von Graefe Phoria Test.”

  She reviewed Dr. Kowar’s notes, and performed a Z-Bell™ Test with the lenses that Dr. Kowar recommended. She said, “Dr. Kowar got this just right. She’s right on.”

  But still she wasn’t satisfied. She tried different lenses and repeated the Z-Bell™ Test, and one of the fixation disparity tests. Then she and Dr. Kowar started a long conversation that lasted, off and on, for the next hour. The issue was to make a decision about how much stress to put me under in making further changes. They could make me more comfortable with the prescription, but then would possibly lose an opportunity to push me farther along the path they wanted my plastic brain to travel.

  Dr. Kowar decided to retest me with a portable handheld lens apparatus. It was less convenient than the phoropter, but in my case important, because it removed some of the phoropter’s blocking of peripheral, nonvisual retinal signals from the testing equation. So I spent another half hour with her, from 1:45 until 2:15 P.M.

  Our dialogue is revealing of the detailed work that went into determining the final prescription. This may sound like something out of a séance, but in fact, it shows the extreme sensitivity I had developed to my nonvisual retinal processing (possibly enhanced by my years of “moving energy around” with my Tai Chi practice?), and also illustrates Dr. Kowar’s long experience in teasing out necessary information from her patients.

  Dr. Kowar put together the handheld versions of the recommended lenses, and then ran me through the Z-Bell™ Test. “Ah-HAH!” she said triumphantly. “I THOUGHT so!” With the handhelds I now measured incorrectly on both sides. She made slight adjustments, and asked me, “How’s that?”

  Me: “Okay, I guess. My hearing/symbol space
is tilted diagonally up on the right side, and definitely emphasizes the right side over the left. But it’s all right.”

  Kowar (laughing): “Well, we don’t want you to be lopsided . . .”

  She tried a different configuration. “Now?”

  Me: “The diagonal has flattened out a little, closer now to being horizontal.”

  Kowar (after more changes): “How about now?”

  Me: “That opens everything up on the left side. A little narrower cognitive space on the right side. I can’t think quite as well over there now.”

  Kowar: “How is the diagonal? Are you still tipped?”

  Me: “No, that seems to have leveled out. I’m very comfortable.”

  Kowar tried the Z-Bells again, checking. I nailed them right on center each time, but even so, she tried a slightly different lens on the left side again. “How about now?”

  Me: “It’s okay, but I’m not quite comfortable.”

  Kowar: “Oh. How?”

  Me: “Well, it’s a little hard to describe, but it’s as though I’m nervous, or unsettled.”

  . . . and so on for the next half hour.

  Dr. Kowar could have gotten all of the same information by taking measurements on my response lag to near and far focus, looking at my altered fixation disparity, and so on, in addition to using the Z-Bell™ Test, as we tried different lenses. But, because of my sensitivity, the self-reporting dialogue was more efficient.

  To get a feel for the “symbolic working space” we discussed, try the following: Close your eyes and picture, up close, the detailed process of tying the bowknot in a pair of lace-up shoes. As you tie it—in your mind’s eye—describe the scene out loud. (This places a verbal-translation load on your brain, in addition to the visualization load.) Push yourself to actually follow all of the bends and twists in each half of the lace. Now repeat the exercise, all the way through, in eight different spots—upper left three feet away, middle far right one foot away, and so on. Can you see the process clearly in each location? Are you comfortable in each part of your symbolic visual field? Most of us will have preferred work areas in the space around us, and some will have zones that are altogether “dead.”